Caring for Your Carer

If we are lucky, we have friends, family and/or partners to help and support us – but do you let them know how much you appreciate them? Love them? Couldn’t live without them? These are our care-givers. (In case you didn’t know, I love you, Mommy! I appreciate you and I can’t live without you!)

Thank You!

I really appreciate you,
Your helpful, giving ways,
And how your generous heart
Your unselfishness displays.

I thank you for your kindness,
I will not soon forget;
You’re one of the nicest people
I have ever met.

Carers provide unpaid care and support to family members and friends who have a disability, mental illness, chronic condition, terminal illness or who are frail & aged. There are currently over 2.6 million unpaid family carers in Australia, more than 770,000 of whom are primary carers – the people who provide the most care (Australian Bureau of Statistics (2009) Survey of Disability, Ageing and Carers).

You Didn’t Have To

Thank you for what you did;
You didn’t have to do it.
I’m glad someone like you
Could help me to get through it.

I’ll always think of you
With a glad and grateful heart;
You are very special;
I knew it from the start!

On average carers spend approximately 40 hours per week providing care.  It is estimated that carers of someone with a mental illness spend on average 104 hours per week in the caring role (Mental Health Council of Australia and Carers Australia (2000) Carers of People with Mental Illness).

Help and Caring

Thanks for doing what you did;
You are kind beyond belief;
Your help and caring calmed me down,
And gave me soothing relief.

Carers often experience reduced physical, mental and emotional health once their caring commences.  Over time the effects of caring may intensify. It is also important for the carers to look after themselves. Carers also need to manage stress, eat well and exercise.

It Doesn’t Seem Enough

I want to tell you “Thank you,”
But it doesn’t seem enough.
Words don’t seem sufficient–
“Blah, blah” and all that stuff.

Please know I have deep feelings
About your generous act.
I really appreciate you;
You’re special, and that’s a fact!

Caring can be physically and emotionally exhausting. Regular breaks from caring can help relieve their stress and exhaustion.

For All You Do

Thank you so much for all you do;
You’re truly a delight;
When my life overwhelms and does me in,
You make everything all right.

The people who care for us often have no choice about their roles. The constant demands of caring and the many changes in family life may bring about a range of feelings and emotions. Some people may feel a sense of satisfaction about being a carer. Others may feel angry and overwhelmed at times. These emotions can be difficult to cope with.

Priorities

Thank you…
for thinking of me
and then wondering
how you could help.
Thank you…
for doing what you did,
instead of being too busy,
or just forgetting about it.
Thank you…
For inking me
on your priority to-do list,
when you have
so many other things to do;
I am honored;
It meant a lot to me.
Thank you.

Maybe it’s time to celebrate and acknowledge the vital role carers play in our lives. Maybe it’s time to say Thank You, I Love You, You’re Fantastic?

 You Made My Day

I appreciate your kindness
More than words can say;
The very nice thing you did for me
Really made my day!

You could drop over with a fruit platter, cake or a bunch of flowers, just to say hello and acknowledge the great job they are doing. You could write a short note of appreciation and leave it in their letter box. You could give them a voucher for a massage or one from a retail outlet like a book shop.

There are so many ways you can say ‘thanks’ to a carer you know or know of.

Poetry by Joanne Kuchs

We Cope, Not Hope (results)

Disease as an adverse interruption of life is the prevalent interpretation of chronic pain conditions. But there are different ways to cope with pain, and there are different ways to regulate emotions associated with chronic diseases. Because most patients with chronic conditions are unable to ‘solve’ our persisting pain by ourselves (in terms of recovery or repair) and to find distance to negative emotions associated with pain, we have to find strategies to adapt to a long-lasting course of illness.

We have to find ways to maintain physical, emotional and spiritual health in spite of often long-lasting courses. Thus, our coping with chronic pain is an ongoing process which includes appraisals of stress, cognitive, behavioural, and emotional coping responses, and subsequent reappraisals of stress.

One of the most frequently used concept on adaptation strategies for patients with chronic pain diseases differentiates active and passive coping:

  • Active coping (i.e., problem solving, including collecting information and refocusing on the problem, or regulation of emotion by focusing attention on the emotional response aroused by the stressor) is associated with less pain, less depression, less functional impairment, and higher general self-efficacy;
  • Passive coping (i.e., avoidance and escape) is correlated with reports of greater depression, greater pain and flare-up activity, greater functional impairment, and lower general self-efficacy.

Although the importance of decreasing maladaptive and encouraging adaptive coping responses is emphasized by innovative treatment programs for chronic pain (if you can get in!), one nevertheless has to ask which adaptive coping strategies were of relevance for the patients.

I asked the same question of you: Which of the following coping strategies best describes the way you cope with your chronic pain?

The answers (so you don’t have to return to the poll) were:

  • Trust in Divine Help in response to disease addresses non-organized intrinsic religiosity as an external transcendent resource to cope (i.e., trust in a higher power which carries through; strong belief that God will help; faith is a strong hold, even in hard times; pray to become healthy again; live in accordance with religious convictions).
  • Trust in Medical Help addresses patients’ reliance on an external medical source of health control (i.e., trust in the therapeutic potentials of modern medicine, take prescribed medication, follow advice of medical practitioners, full confidence in doctors and therapists).
  • Search for Information and Alternative Help refers to external sources providing additional information or alternative help (i.e., thoroughly informed about disease; get thorough information how to become healthy again; find people who can help; search for alternative ways of healing).
  • Conscious Way of Living addresses cognitive and behavioural strategies in terms of internal powers and virtues (i.e., healthy diet; physical fitness; living consciously; keep away harmful influences; change life to get well).
  • Positive Attitudes refers to internal cognitive and behavioural strategies (i.e., realization of shelved dreams and wishes; resolving cumbering situations of the past; take life in own hands; doing all that what pleases; positive thinking; avoiding thinking at illness).
  • Reappraisal: Illness as Chance addresses a reappraisal attitude referring to cognitive processes of life reflection (i.e., reflect on what is essential in life; illness has meaning; illness as a chance for development; appreciation of life because of illness).
  • Escape from illness (i.e., fear what illness will bring; would like to run away from illness; when I wake up, I don’t know how to face the day)

The study, which started all of this, had 579 participants – we had 239 (not too bad). The study also asked demographic type questions but I decided not to make it too long a poll so we could have more answers.

From highest reliance to lowest here are the results from both the study and our poll:

results

We (as a group) seem to be much more aggressive, active participants in the search for sufficient condition management.

coping

Most study patients tended to externalize the process of disease management, i.e., the chronic pain disease was regarded as an adverse interruption of life, and patients called experts for help (i.e., medical doctors or therapists), and followed their advice or relied on the effects of prescribed remedies, which alone is a rather passive strategy. However, if you add (internal) cognitive-behavioural changes (i.e., patients may change distinct aspects of their life, try to become more consciously, healthy, physically fit, use distinct diets etc) or try to think positive (resolve cumbering situations of past, realize shelved dreams and wishes etc.) – both are active strategies.

In face of an insufficient manageability of chronic pain, some patients may call upon ‘more powerful’ external others (i.e., Trust in Divine Help), because the conventional resources of help seem to be (subjectively) exhausted.

In general, both groups relied on external powerful sources to control their disease (i.e., Trust in Medical Help; Search for Information and Alternative Help), but also on internal powers and virtues (i.e., Conscious Way of Living; Positive Attitudes).

In contrast, Trust in Divine Help as an external transcendent source and Reappraisal: Illness as Chance as an internal (cognitive) strategy were valued moderately.

Escape from Illness (which is not regarded as an adaptive coping strategy) was highly associated with depressive disorders.

The researchers came to the conclusion that to restore a sense of self-control over pain as well as the conviction that you are not necessarily disabled by disease and that pain is not necessarily a sign of damage is a major task in patient care. Changing negative/maladaptive illness interpretations and depressive or avoidance coping by means of an intervention and encouraging social support by means of patient support groups may at least improve quality of life.

Apart from effective pain management, a comprehensive approach is needed which enhances the psycho-spiritual well-being, i.e. self-awareness, coping and adjusting effectively with stress, relationships, sense of faith, sense of empowerment and confidence, and living with meaning and hope.

Further studies are required (of course!), particularly longitudinal studies to measure changes in the weighting of adaptive coping strategies and interpretations of disease with respect to pain intensity, and comprehensive intervention programs.

lrg_Ornamental_Divider__Englische_Linie

F.Y.I. – The utilization of the different adaptive coping strategies did not significantly differ with respect to gender, while the educational level had a small impact on Trust in Medical Help, which was the highest in patients with a lower educational level. Age had a significant impact on Trust in Divine Help, Trust in Medical Help and Conscious Way of Living. The duration of the condition had no significant impact on the adaptive coping strategies.

An obvious result showed that patients from the outpatient clinic had significantly higher scores for Trust in Medical Help and Escape from Illness than patients from the rehabilitation clinic or patients attending the mind-body program, and were also in Search for Information and Alternative Help. This may indicate higher need for external help.

 

Chronic Counsel

Fibromyalgia is a chronic condition. A chronic condition is a medical condition that will last a long time – perhaps forever. Some chronic conditions get worse over time, some may improve with treatment, and some may remain dormant until an acute flare-up.

The common denominator with all chronic conditions (not just FM): those who are diagnosed with them tend to feel isolated: mentally and physically. It’s a huge blow to learn you will forever have an incurable syndrome that may affect mobility, lifestyle and independence.

Research has shown that family and friends play a tremendous role in helping patients deal with a chronic illness. But sometimes it is difficult for a) you to let those people in, and b) for those people to know what to do help.

Hands up if you never tell people how you really feel – then how are they supposed to know? Hands up if you never let anyone see you when you are having a flare – then how will they know what it’s like? Now, I’m not just blaming us – our friends and family (those that matter) need to make some effort, too.

Tips for You (“the sufferer”):

  • Put an end to family secrets. Don’t try to protect your friends and family from bad news – communicate directly and openly with family members.
  • Include your children – even though their understanding of the illness may be limited, children appreciate being told what’s going on around them. Otherwise, children may believe that they are the cause of the serious illness or other events around them. Be open and honest with them, and allow them to ask questions.
  • Be selective about who you talk to about the illness. Choose carefully those with whom you’d like to share information about this illness. What matters is that sharing the information about the illness will provide a stronger sense of support and strength.
  • Be clear about how friends and family can help you. People love to feel useful, so don’t be afraid to ask for help.
  • Be your own advocate. It’s so hard to learn to speak up about your condition. It’s hard to talk about it sometimes. And it’s really hard to ask for special treatment if you’re not that kind of person. But be brave, and learn to ask for help when you need it.
  • Find a support group. Go to it. Take a family member or friend if you’re scared. It’s okay to be scared.

There will be people who will not understand, and may not believe you. Those people may be people you care about. There may come a point where you simply have to accept that you can never talk about your condition with that person. It will be okay, even though it sucks. Some people simply cannot deal with a chronic illness. And can we blame them? Wouldn’t you walk away from your own chronic illness, if only you could?

Tips for Your Family and Friends (“the Family and Friends”):

  • Be honest – all I want to know is that you are here and that you care about me.
  • Be there for me in any way you can.
  • Come to support group meetings with me. Family and friends are always welcome, and that’s the best place to ask questions you’re nervous about asking.
  • Keeping it light and making jokes is okay. I’m not as fragile as I sometimes seem. It’s all about the timing and the presentation. Laughter is healthy.
  • Let me know that I can always talk to you – even if it’s just a vent session.
  • Always listen when I am frustrated – chronic illnesses are VERY frustrating.
  • Be there if I need help, but also encourage me when I want to do it myself.
  • Remind me, every now and then, that I am coping well.
  • Treat me like a whole person – despite any limitations. I want to feel in control and capable, not as if I have SICK PERSON tattooed across my forehead.
  • Learn about my illness. Ask me for more information. Just because you read about FM online doesn’t mean you know how it affects me.
  • Remind me that you are thinking about me – send a card, an email, a text, a phone call (flowers and presents are good, too!)
  • Offer specific forms of help – you might be able to pick up something from the supermarket for me, when you’re there.
  • Offer to help research, if I want your help.
  • Volunteer to watch my children. Take the kids out for ice cream or to a movie to give me some peace or during doctors’ appointments. It’s often hard to find babysitters, and taking kids to an important appointment isn’t always an option.
  • Offer to drive me to places where I may need help – the doctor’s office, the supermarket, other errands.
  • Offer to take me to the doctor and take notes for them.
  • Encourage me to continue trying new things. When treatments don’t work, I get discouraged. Stay by my side, remind me that you’ll be there when I am ready to try something new. (That tells me that I have a reason to keep trying.) Just keep it generic, so I don’t feel like you’re being a know-it-all.
  • Advocate for me.

DO NOT:

  • Don’t tell me how I “should” feel – Unless you have my illness, you do not know.
  • Don’t presume you know what’s wrong with me.
  • Don’t compare your (xyz) to my (abc). That’s like comparing apples to elephants.
  • Don’t discuss worst-case-scenarios unless I bring it up first.
  • Don’t suggest drugs or treatments someone you know takes. I am going through a treatment plan with my doctor – let the doctor take care of the medical advice.
  • Don’t criticise me for whining on a rough day.
  • Don’t offer the latest medical advice you heard about on Dr Oz. In fact, don’t give me medical advice at ALL, unless I have asked for you to help research the illness.
  • Don’t downplay or belittle my condition in any way. I am fighting a battle – don’t lose sight of that.
  • Don’t assume I cope in the same ways that you do. Let me cope in my own way. Don’t tell me that I am coping the wrong way.
  • Don’t say, “God will heal you,” it may make me think that you don’t understand what I am going through.
  • Don’t bring up each “cure” that you’ve heard about. Sometimes I just need a break!
  • Illness isn’t just a matter of attitude. Don’t say things like “when are you going to get out of bed?”
  • Be sensitive to my limitations. I know my limitations, which may change from day-to-day. Things I could do yesterday may not be the same as what I can do today. Don’t question that.
  • Never insinuate that I am”faking it.” People with chronic illness generally downplay the severity themselves, but to hear someone imply that the illness is “made-up” is a special breed of hurt.
  • Don’t ever ask “How are you?” or “How are you feeling?” because the answer never changes and I don’t want to talk about it. Instead ask, “How is your day going?” or “Is there anything you need help with today?”

*** If you need some basic information about FM, please feel free to download any of my pages or brochures to give to family and friends.

*** Perhaps watching a short video may help your friends and family understand more.

*** If you are looking for a support group in your area, the National Fibromyalgia and Chronic Pain Association has a list of world-wide groups (it is by no means complete; so if you have a group, please add it to their list)

Related articles

10 Reasons To Increase Fibromyalgia Awareness

Today I have run out of things to say so, yes! this is a repeat post – but it is still vitally important!

    1. As we all know, it takes some people years and years to find out what is wrong and finally be diagnosed. If everyone knew all about fibromyalgia, then people could be diagnosed earlier. There would be  less of those depressing years of searching for answers.
    2. Sufferers will feel less alone – they will see posters and information booklets EVERYWHERE, giving them tips on how to cope.
    3. Doctors will become more interested in our condition and start investigating (and keeping up to date with) the newest medications and treatments, rather than ‘It’s Fibromyalgia – there’s nothing I can do.’
    4. Medical researchers and scientists will be more interested in finding a cure! Nobody wants to spend their time looking for a cure for something that no-one has heard of, they all want to cure the illnesses that people know about!
    5. We will no longer have to answer questions such as ‘Fibro-my-WHAT?’, ‘Fibromyalgia? What on Earth is that?’ or ‘Is that even real?’ No more long difficult explanations of the never-ending symptoms.
    6. People may even become more understanding! Relatives and friends will understand why you don’t feel up to partying. Employers understand why you have limitations and will be able to give you suitable arrangements because they will know what they are dealing with.
    7. Advertising companies will realise that there are a LOT of us and will design fibro-friendly products such as ride-on vacuum cleaners, ergonomically designed car seats, etc.
    8. More support groups will be formed as a result of more people realising that they have fibromyalgia.
    9. More people will donate money to research to find new treatments and… dare I say it… maybe even a cure!
    10. Because it makes you feel good about yourself!! You aren’t just doing this for yourself; we are doing this as a TEAM EFFORT! We need to reach as many people as possible to make this a success.

Attention Single, Divorced and /or Friendless

 

Firstly, some facts (this is not me feeling sorry for myself, just facts):

  • I am single (read divorced and/or friendless depending on your situation)
  • I am sick (with no cure on the immediate horizon)
  • I have only one friend who actually visits with me
  • I have no particular interests outside my home

So, I was thinking, is this my lot in life forever? Will I ever meet a prospective partner? How will I meet a prospective partner? Does he deserve a partner who is continually unable to meet her responsibilities? Okay, forget a partner, how about some new friends?

These questions sent my mind racing – I can’t drive more than about 10 kilometres before my arms, shoulders and head start to hurt; I can’t go to parties (even if I was invited) because the noise and other distractions are too much for me to handle; there are no clubs or groups in my area that I wish to join. So, what is a FM sufferer to do?

Why, take to the internet, of course! ‘How to meet new people’ was my search term:

Succeed Socially.com offered a list of places to meet people

  • Through your friends, significant other, and other people you already know

This point obviously will not work for one in my situation

  • Work

I am still unable to work

  • Volunteering

As I am unable to be reliable in a work situation, I am unable to commit to volunteering. I used to volunteer regularly at a local legal centre – it was incredibly satisfying and I miss being able to help others.

  • Classes

I go to my self-help hydro groups, where the closest person in age to myself is about 25 years older than me. They are a lovely group at Hydro but I doubt greatly that we have very much in common outside being ill and/or disabled.

  • A club or organization

The appeal here is obvious. You join up and you instantly know a group of people who share a similar interest to yours. But what happens if you no longer have any interests? Other than researching fibromyalgia, spreading awareness about fibromyalgia and raising funds for fibromyalgia research. Kind of sounds like I should join or start my own fibromyalgia support group, right?  But, with this type of group, it would probably take all our efforts just to turn up to meetings, let alone maintain friendships outside the group.

  • A sports team or league

Are you kidding?

  • Through your religion

I am not religious. I believe in a higher being but I do not know of a public denomination which shares these same values.

  • Through your kids

Another moot point for me

  • Your living situation

Living in a large building with lots of other people your age around is better than being in a small place with no one who’s similar to you. Guess what my situation is? I live in a block of units (alone) where, currently, there is no-one with any similarities to me at all. How can this happen? (rhetorical question!)

  • Your family

No real help there, although my grandfather (before he died) tried to set me up with a 71-year-old ex-doctor.

  • At a party

Too much noise, too many people, just TOO!

  • An individual sport

How many FM sufferers do you know who do a sport? And I’m not one of them.

  • Online

Hmm…what would my ad look like:

SWF in chronic pain, with control freak tendencies, seeking understanding, compassionate friends with low expectations.

Would any of you answer that one?

 

There were a number of other suggestions but you get the idea…so, tell me, fibroMAGICians, what do you do?

 

Loneliness is the Most Terrible Poverty


I’ll admit that sometimes I like to just hide alone in my little house and be by myself – because (beyond the physical) living with the emotional pain of trying to cope with FM can be exhausting. And, sometimes, I don’t want to put on my happy face; I just want to sit, in silence, and brood.

But whether you’re all alone, by yourself like me, or all alone and surrounded by people who don’t understand, living with FM can feel total isolating.

There are plausible reasons why living with FM makes it seem like you’re living on the peripheral of life:

  • An Invisible Condition. FM is an intensely painful experience for us, but it is invisible to those (especially those who aren’t really looking) around you.
  • Trauma. FM, whether set off by a traumatic event or not, is a trauma in itself. It is like a permanent fight-or-flight setting, and when your whole system is set to trauma response, it’s hard to invest in relationships.
  • Altered sense of self. Chronic pain can change the way we relate to ourselves. If the relationship with ourselves is disrupted, you’ll see ripple effects in all your other relationships.
  • Other people’s reactions. Living with FM often means becoming accustomed to the people around you telling you that your condition is “all in your head” and that you should “snap out of it.” But you know what you feel is real, and being misunderstood and judged isn’t conducive to happy relationships.
  • Practical barriers. Pain, fatigue, and related problems such as sleeplessness and mood changes can make it difficult to show up at social events or even work up the energy for a phone call. It makes it very difficult to do the things you want to do. You can never make plans, as you never know how you are going to feel from day to day. These barriers cause isolation and may even lead to depression.

Connecting with supportive people, although not always easy to find, can help us overcome these emotional side effects.

The Ultimate Relationship Dream List

  1. Working with a doctor who understands fibromyalgia and is keeping up with cutting-edge research should lead to effective treatment approaches — perhaps medication, lifestyle changes, or alternative therapies such as acupuncture.
  2. You want a variety of relationships, and spending time with others who have FM could ease some of your isolation. There may not be others within your physical proximity but you can establish cyber-relationships by joining on-line support groups that meet your needs. My Facebook page may not be your sort of thing, but at the bottom of this page is a list of other support groups that you might want to explore.
  3. Don’t engage with the people who say FM is NOT real – although you can’t cut off your family, you can limit the time you spend with those who refuse to acknowledge what you’re going through.
  4. Whether it stems from living with FM or has another cause, depression is a common coexisting condition. Depression treatment or stress-coping skills should be part of your treatment plan and will help ease loneliness as part of the healing process.
  5. Don’t forget to give yourself time to see results – forming relationships takes time. As your emotional distress eases and we find ways to manage our stressful relationships, hopefully we will start to feel less isolated.
  6. And, lastly, believing you will be trapped forever in an incurable, painful condition can be a self-fulfilling prophecy. So if that’s your mind-set, it’s time to start building a support system of doctors, nurses, friends, and family. This network will help you cope with and manage your fibromyalgia symptoms more effectively so you can get back to the life you deserve.

A Little Mad

I’m a little mad (not crazy mad, fuming mad!)

I was doing my normal posting of information on Facebook. Because I am aiming my soon-to-be charity in Australia, I posted some information from my Facebook page site to other Australian Facebook pages. Then, because I am personally a member of particular Facebook groups, I posted the same info on their pages.

Well, then I got a couple of comments from other members…

But, first:

  1. I fully believe we are an INTERNATIONAL community of people with FM.
  2. I fully believe we are an international COMMUNITY of people with FM.
  3. Until now, I hadn’t noticed but, I use the word WE all the time when talking about people with FM.
  4. I wear a purple support bracelet from The Fibromyalgia Crusade, a US based cause group.
  5. My most recent video included people with FM from all over the world.
  6. I have been trying to help other FM groups with their promotions, no matter where they have been based.
  7. I have two (well, I gave one to Z) FM awareness rubber duckies that I bought from the US.
  8. I re-edited one of my videos in Portuguese because one lady wanted to show it to her family and they didn’t speak English.

My point is: we are all in this together. It doesn’t matter where a treatment or cure is found; it will be shared (sooner or later) worldwide, so I believe we need to support each other.

…Now back to the comments: It was pointed out to me (by two members) that the page I had posted on was a US based charity support group; and that it was more important to support each other first.

Now, this group has 1,058 members. I can’t decipher where all the members come from, so I’m pretty sure that these ignorant, uninformed (no Word thesaurus word for idiot or moron) malingerers can’t do it, either. There is nothing in the name of the group that states that it is a US only support group, so I can pretty safely assume that some members are from places other than the US – so I am not sure who these two people think that they are supporting: is it only US-based research? Is it only US-based treatments? Is it only finding a cure in the US?

Ha! And do you think that if I, or an Israeli or a Canadian or a New Zealander or a Dane (you get the idea), should somehow find a cure for FM, that these two <insert your own word here> would not be in the line to buy it?

Giant rant over now, but I’m still fuming mad!

NEW! Living Well with Fibromyalgia

In my endless search for ways to spread awareness and educate myself, I have started a newsletter.

Welcome to the first issue of Living Well with Fibromyalgia.

Click here to see the first issue

Currently, it might be a little boring as I am the one and only contributor; …however, if you would like to submit a story, story idea or tips for other sufferers, for upcoming issues, please email me at fibromodem@bigpond.com.

For this issue, I have posted the newsletter on a variety of different sites, pages and here – but, if you would like to make sure that you don’t miss out next time, please subscribe (at no cost) by emailing me at fibromodem@bigpond.com. I will never sell your details (I wouldn’t know how to) or send you crap!

If you are selling something, I will not be printing an article. You are able to buy advertising space by contacting me at fibromodem@bigpond.com.

I hope you can see what future issues might be like, and that you choose to support this new endeavour!

 

Boost Your Buffers

***WARNING – really long post***

Some of us are lucky enough to have a Support Group to go to for monthly/weekly meetings. And some of us aren’t.

If you are looking for a support group in your area, the National Fibromyalgia and Chronic Pain Association has a list of world-wide groups (it is by no means complete; so if you have a group, please add it to their list). But what happens when there is no group near you?

Why not start your own support group?

Anyone can start a Support Group – It does not require special skills or training and there are no legal, insurance or financial obligations involved in bringing people together to support each other.

Why start a Support Group?

  • To overcome personal hardship and to improve your quality of life
  • To meet needs not being met within the community
  • To meet with other people in a similar situation
  • To bring about change through advocacy or campaigning
  • To empower yourself and others
  • To help yourself and others by learning new ways of dealing with the issue
  • To create the opportunity to take control of your life
  • To gain inspiration and support by sharing personal experiences and coping strategies
  • To create awareness and understanding of the issue

BUT, starting a group can place demands on your time, family, social life and possibly your finances. You might have to cope emotionally with other people’s issues as well as your own. Before you start a group, think ahead and be clear about how much time, energy and resources you have available.

It is important to focus your ideas on what kind of group you hope to develop. Find out if there is already an established Support Group surrounding the issue. If so, talk to the contact person or attend a meeting. Groups involved with the same issue may have different aims and objectives. One group may lobby for change, while another exists to provide information and mutual support.

If you are interested in starting such a support group in your area, here are some tips for getting started:

1. Once you have decided to start a Support Group, take your time, as there is no need to get things done quickly. Six weeks is adequate time to get a good response and to be prepared.

2. Define the Key Issue that the group members will meet to discuss and share

3. Create a Statement of Purpose and the Aims and Objectives

4. Consider the Costs Involved Phone calls

  • Refreshments
  • Postage
  • Venue hire
  • Flyers

Seek Assistance where possible

  • Approach your local Member of Parliament (MP) to ask for assistance with photocopying and administration.
  • Ask for a small donation at meetings.
  • Contact your local council, as many fund causes that benefit local residents.
  • Approach your local church, council office, or library and ask for the donation of a room.

5. Pick a name for your group – Try to make the name interesting, inviting and relevant to the issue.

6, Set and Confirm a Meeting Date and Time – Think of the availability of your target group when planning your meeting.

7. Start talking about it! This is the most important step. Talk to your doctor, physio, rheumatologist, etc. They may know something, or may talk to a supervisor who can help.

8. Book the Venue.

9. Establish a Contact Person – A contact person is the first line of communication between the public and the group. A separate telephone number strictly for use by the support group is great, but not always practical or possible because of the group’s budget restrictions. Sometimes organizations providing meeting rooms have voice mail systems available for the groups they host. This kind of set up can be really handy because group members can take turns in retrieving and answering messages. Should you decide to use your own home or office phone number (your boss might be real impressed?) for the group, make sure all family members know about it.

10. Decide on some Group Activities – Will you hold organised social outings, have guest speakers, exchange personal experiences, campaign for change or discuss the latest research?

11. Make flyers. Yes, this may take some footwork, but you can email or fax directly from your computer. Places to advertise your group include:

  • Supermarkets
  • Variety stores
  • Music stores (musicians are prime candidates)
  • Health food stores
  • Laundromats
  • Drug stores or pharmacies – Keep in mind, many pharmacies do not allow posters of any kind. If they don’t have a pin-up board ask the head pharmacist and give them a copy of your flyer “for their own records” while you’re at it.
  • Public libraries
  • Post office boxes
  • Lunch/staff rooms
  • Hospitals
  • Colleges, universities, schools
  • Churches
  • Doctors’ offices – if you can personally give one to the doctor, perfect. You probably only get to talk to the receptionist so give them two: one for the doctor and one “for keeping on file.” And heck, since you happen to spot a bulletin board, “mind if I stick one on there…”
  • Town/city event calendars – often a place where your group can get a mention.
  • Senior Citizen buildings – check with the building manager for in-house newsletters.
  • Local TV/radio stations – community announcements, talk show hosts, newsroom.

Ask group members to take a few flyers to put up around their neighbourhood to spread the word. They can give one to their family doctor, dentist etc. next time they need to see them.

12. Get it in the local newspaper.

13. Don’t expect a huge turnout immediately. Don’t be discouraged if you start small. Small is good.

14. Create an e-mail list and a phone calling list. Find someone in the group who will help with each.

15. Get others involved as fast as possible in brainstorming on meeting topics, speakers, etc. The more people who buy into the group as being a WE group, the more participation there will be. And remember, you can’t do it all. It must be a WE group to survive.

16. Save all the handouts that you get for each group to give to the new people.

 

 

 

 

 

 

Wow! All this sure sounds like it’s going to take up a lot of my time! It could, period. But all in all, a couple of hours a month for the meeting itself plus a couple of hours a month delivering flyers is not that big a deal. It will give you a sense of fulfilment and achievement. When the group gets bigger you can get others to help out doing chores.

Personal Sanity

You need to completely, totally be aware that the going can get rough, very rough. You’ll meet people who are at various stages in their journey. Some are only curious. Some are there at the suggestions of their physicians. Some are there to clutch on even the tiniest glimmer of hope they pray for that you might give them. Some of these folks are in dire straits and they’ll spring their horror stories on you about how totally screwed up their lives are. Listening to these gruesomely descriptive tales can really, really, really get to you. You need to line up someone who you can talk to if/when that happens beforehand because chances are that someday you will need to depend on them to help put things in perspective. Don’t assume for one second that you’ve heard it all, even if you been doing it for a while, because I assure you haven’t.

Frustrations

After having done all the leg work, the announcement is in the paper and you sit there eagerly awaiting the first few hundred people to come through the doors – and only two show up… You figured if one out of five people are supposed to have it (to whatever degree), you ought to be able to fill up the football stadium once a week… Yup, there could be more, should be more, but this too, is sometimes a reality. Simple: you tried your best, you’ve done your job. Since there’s only a few members it’ll give you more chance to really talk to them and reach a little deeper than in a sold-out house. You can also exploit the low turnout by focusing more on the few that are there. Can they help to promote the group? Do they have suggestions? It could be that low turnouts are common for your area. So before feeling bad about doing a crummy job – put it in perspective. And, even if you reach only one person, you’ve reached one more than had you not tried at all – pat yourself on the back for doing a great job!

Remember, if you start a support group – list it with the National Fibromyalgia and Chronic Pain Association. Also, please let me know – I would be really interested in hearing how it goes.

Chronic Do’s and Don’t’s

Fibromyalgia is a chronic condition. A chronic condition is a medical condition that will last a long time – perhaps forever. Some chronic conditions get worse over time, some may improve with treatment, and some may remain dormant until an acute flare-up.

The common denominator with all chronic conditions (not just FM): those who are diagnosed with them tend to feel isolated: mentally and physically. It’s a huge blow to learn you will forever have an incurable syndrome that may affect mobility, lifestyle and independence.

Research has shown that family and friends play a tremendous role in helping patients deal with a chronic illness. But sometimes it is difficult for a) you to let those people in, and b) for those people to know what to do help.

Hands up if you never tell people how you really feel – then how are they supposed to know? Hands up if you never let anyone see you when you are having a flare – then how will they know what it’s like? Now, I’m not just blaming us – our friends and family (those that matter) need to make some effort, too.

Tips for You (“the sufferer”):

Put an end to family secrets. Don’t try to protect your friends and family from bad news – communicate directly and openly with family members.

Include your children – even though their understanding of the illness may be limited, children appreciate being told what’s going on around them. Otherwise, children may believe that they are the cause of the serious illness or other events around them. Be open and honest with them, and allow them to ask questions.

Be selective about who you talk to about the illness. Choose carefully those with whom you’d like to share information about this illness. What matters is that sharing the information about the illness will provide a stronger sense of support and strength.

Be clear about how friends and family can help you. People love to feel useful, so don’t be afraid to ask for help.

Be your own advocate. It’s so hard to learn to speak up about your condition. It’s hard to talk about it sometimes. And it’s really hard to ask for special treatment if you’re not that kind of person. But be brave, and learn to ask for help when you need it.

Find a support group. Go to it. Take a family member or friend if you’re scared. It’s okay to be scared.

There will be people who will not understand, and may not believe you. Those people may be people you care about. There may come a point where you simply have to accept that you can never talk about your condition with that person. It will be okay, even though it sucks. Some people simply cannot deal with a chronic illness. And can we blame them? Wouldn’t you walk away from your own chronic illness, if only you could?

Tips for Your Family and Friends (“the Family and Friends”):

Be honest – all I want to know is that you are here and that you care about me.

Be there for me in any way you can.

Come to support group meetings with me. Family and friends are always welcome, and that’s the best place to ask questions you’re nervous about asking.

Keeping it light and making jokes is okay. I’m not as fragile as I sometimes seem. It’s all about the timing and the presentation. Laughter is healthy.

Let me know that I can always talk to you – even if it’s just a vent session.

Always listen when I am frustrated – chronic illnesses are VERY frustrating.

Be there if I need help, but also encourage me when I want to do it myself.

Remind me, every now and then, that I am coping well.

Treat me like a whole person – despite any limitations. I want to feel in control and capable, not as if I have SICK PERSON tattooed across my forehead.

Learn about my illness. Ask me for more information. Just because you read about FM online doesn’t mean you know how it affects me.

Remind me that you are thinking about me – send a card, an email, a text, a phone call (flowers and presents are good, too!)

Offer specific forms of help – you might be able to pick up something from the supermarket for me, when you’re there.

Offer to help research, if I want your help.

Volunteer to watch my children. Take the kids out for ice cream or to a movie to give me some peace or during doctors’ appointments. It’s often hard to find babysitters, and taking kids to an important appointment isn’t always an option.

Offer to drive me to places where I may need help – the doctor’s office, the supermarket, other errands.

Offer to take me to the doctor and take notes for them.

Encourage me to continue trying new things. When treatments don’t work, I get discouraged. Stay by my side, remind me that you’ll be there when I am ready to try something new. (That tells me that I have a reason to keep trying.) Just keep it generic, so I don’t feel like you’re being a know-it-all.

Advocate for me.

DO NOT:

Don’t tell me how I “should” feel – Unless you have my illness, you do not know.

Don’t presume you know what’s wrong with me.

Don’t compare your (xyz) to my (abc). That’s like comparing apples to elephants.

Don’t discuss worst-case-scenarios unless I bring it up first.

Don’t suggest drugs or treatments someone you know takes. I am going through a treatment plan with my doctor – let the doctor take care of the medical advice.

Don’t criticise me for whining on a rough day.

Don’t offer the latest medical advice you heard about on Dr Oz. In fact, don’t give me medical advice at ALL, unless I have asked for you to help research the illness.

Don’t downplay or belittle my condition in any way. I am fighting a battle – don’t lose sight of that.

Don’t assume I cope in the same ways that you do. Let me cope in my own way. Don’t tell me that I am coping the wrong way.

Don’t say, “God will heal you,” it may make me think that you don’t understand what I am going through.

Don’t bring up each “cure” that you’ve heard about. Sometimes I just need a break!

Illness isn’t just a matter of attitude. Don’t say things like “when are you going to get out of bed?”

Be sensitive to my limitations. I know my limitations, which may change from day-to-day. Things I could do yesterday may not be the same as what I can do today. Don’t question that.

Never insinuate that I am”faking it.” People with chronic illness generally downplay the severity themselves, but to hear someone imply that the illness is “made-up” is a special breed of hurt.

Don’t ever ask “How are you?” or “How are you feeling?” because the answer never changes and I don’t want to talk about it. Instead ask, “How is your day going?” or “Is there anything you need help with today?”

 

*** If you need some basic information about FM, please feel free to download any of my pages or brochures to give to family and friends.

*** Perhaps watching a short video may help your friends and family understand more.

*** If you are looking for a support group in your area, the National Fibromyalgia and Chronic Pain Association has a list of world-wide groups (it is by no means complete; so if you have a group, please add it to their list)