Dos and Dont’s for partners of Fibro warriors

Living with Fibromyalgia is death by a thousand cuts (or that is how it feels every morning I wake up and every night I go to bed). It is a syndrome characterized by widespread, chronic pain, increased sensitivity to pressure and fatigue (even with little to no exertion). There is no known cause, no specific tests for diagnosis and no cure. Imagine the worst flu you have ever had. Multiply it by ten and make it permanent. That is the lowest level of pain and fatigue fibromyalgia sufferers have every single day of their lives.

So if you have a partner who has recently been diagnosed with fibromyalgia, you may feel lost, confused, worried, frustrated and even angry. I always thought my life would have been considerably better had my husband received some help (which would have made his life better as well, of course). So here is a list which my husband would have killed to have 7 years ago. I am sure you will find something that is useful here even if you have a partner who has been suffering for a while — there is always something more that you can do!

Dos

1. Do tell them you are sorry that they have to be in pain always. Tell them you cannot even imagine how it must feel because, let’s face it, you can’t — right?

2. Do ask them how they are feeling and if they want to talk about it. If they want to, listen to them patiently and respond. Let them talk about their pain as many times as they want to and more importantly, LISTEN. If they don’t want to, give them time.

3. Do educate yourself about their illness and its consequences, especially the invisible ones. Research, research, research and make yourself as aware as you possibly can about their condition.

4. Do accompany them to the doctor if they need or want it. Do help them stand up for themselves if they have a doctor who dismisses their concerns.

5. Do talk with them and find out what assistance they might need from you and if you can do it, please do — please! Do make a list of everything that could possibly be difficult for them — at home, at work or in general. See which of those could be eliminated or reduced either with some help from you or someone else or a change in your lives (even if it means something big, although that could take time and involves a number of factors).

6. Do have gentle discussions with them about what foods are good for them and either cook for or with them whenever possible.

7. Do help them exercise, especially if you live with or near them. This could mean going for short walks or doing gentle stretches with them. Or take care of things at home during the only time when they find the energy to exercise.

8. Do remind them about their supplements and medication gently. Do keep an eye on any symptoms, patterns or triggers that are noticeable, write them down and discuss it with them if they are open to it.

9. Do your research and find interesting things that they can see, eat and do without pain or too much difficulty and suggest these to them periodically. Make them laugh. Do small things for them that will make them smile and celebrate small victories — like a full week without a flare up!

10. Do slow your pace down. They may not be able to do as much as you do (for example walk as fast as you or do as much as you want to during a vacation). Readjust your expectations from your relationship.

Please get yourself psychological support, either from a clinical psychologist or if you cannot afford one, at least a helpline or a community organization. Eat well, sleep enough and exercise regularly. Talk to a trusted friend about how you feel (although discuss the limits of this beforehand with your partner). Take care of yourselves really well and take a break if you need to and can afford it.

Don’ts

1. Don’t tell them everything is going to be alright. You don’t know that.

2. Don’t tell them that they don’t look sick or ask them if it is even a real illness. It is, and you don’t have it, so stop right there.

3. Don’t expect them to carry on with their lives as always and even more important, don’t let them, but be gentle about it.

4. Don’t treat them like a perpetually ill person either. Treat them with the care and dignity that they deserve.

5. Don’t be an observer or a passive supporter in their life. Don’t sit quietly when they are researching about treatment options, battling with the insurance company to get reimbursements, struggling to stand up for themselves with their doctor who is simply not intent on improving the quality of their life. Don’t let them fight their battles alone or feel like they are in this alone. That is worse than the actual pain.

6. Don’t dump on them every research, medication or alternative therapy option that you have come across either. Weigh everything out, write down research with sources and share it with them for them to be able to discuss it with their doctor.

7. Don’t wait for them to ask for help or tell you in exactly what way you can help them. Don’t assume that since they have not asked for help or told you what to do, you don’t have to do anything. Do your research, use your common sense, empathy and kindness.

8. Don’t assume that their career or personal goals have to be on the back burner now that they have a diagnosis and therefore move your shift entirely to yours.

9. Don’t be insensitive and do the things that they cannot in front of them as though everything is normal. This does not mean you have to live like a monk forever. It just means you should try to be sensitive in the early days after the diagnosis until you can figure out the new normal.

10. Don’t ever let them think that you are angry or frustrated with them because of their condition. You will be frustrated and angry. You are only human. Make sure to let them understand that your frustration comes from the fact that you are seeing your partner suffer and you feel helpless. Take some time to clear your head, just let them know why you are doing it.

Assess, Accept and Adapt your life and your relationship for the person that you love. What a person with Fibromyalgia needs is, unfortunately, not simple. We don’t want to feel lonely in our pain but we also don’t want to be treated like we are made of glass (although sometimes it does feel like that). What we want the world to know is that although our illness is invisible, we are not, nor are our feelings and dreams. That should start with our partners.