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)

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14 Comments

  1. having a bad day today, your blog helps lift my spirits.

    • I think it might be time for you to do something to spoil yourself – just because you deserve it!

      I hope your day gets better and more manageable; and I’m really glad you like my blog.

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  3. Pingback: When is honesty the best policy? « Living on the Green Edge

  4. I’m definitely guilty of downplaying. The most I really ever say to anyone is “I hurt today” or “it’s not a good day”, and even then only to my BF or my daughter. I’m afraid BF will get tired of hearing about it, so I limit the information I give him.

    Thank you! You’ve (yet again) give me something to think about!

  5. Pingback: Dancing with chronic pain… « Living on the Green Edge

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  8. I’ve found this page and I’m so glad I did. Looking forward to reading and commenting to people that understand.

  9. Pingback: Chronic Do’s and Don’t’s from fibromodem.com « Just Breathe: Slow Deep Breathes Positive Solutions for Living with Chronic Illness

  10. Thank you for your blog..it helps me on bad days…which during the winter and stressful days..they’re so often anymore. I can’t really talk to my family..because no matter how I try to explain it, they “have pain too” “Her arthritis is bad today” WTF?? Pardon, but it isn’t arthritis throughout my body on fire..Anyway..no matter how I try to explain it to them..they just, “Yep, will read this when I have time.” “Well those symptoms can be from any other number of problems you have..” But they are specific to Fibro, and I know a fibro flare very much so!! GRR Any way..also wanted to let you know your pdf brochure is gone, 404 not there. Was going to print some out and share..see if they’d even listen..but I doubt.

  11. Pingback: Boost Your Buffers : FibroModem

  12. I have suffered for years with FM. I will try to check ur site more often, I just found it.

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