Helping Your Family to Understand Fibromyalgia

Since I was diagnosed with Fibromyalgia, I have seen my family relationships change more than any other relationships in my life. Friends come and go, coworkers move on, doctors disappoint us… Family, though, are a bit stuck with us aren’t they?

I was 21 years old and dumb when I got this diagnosis. I wallowed in a hole of self pity for a couple of years. I thought for sure they were wrong about the “not terminal” part of the diagnosis, because how in the world could something hurt this bad forever and not kill you? I had two children at the time under 4. One was already living with my mother and the other with me. How a mother faces that alone is difficult, but you add in a divorce at that age and a diagnosis like I had just received, well… Im sure you can imagine what state I was in.

At the time, I was on stupid amounts of medicine. That was what they did back then. I was barely conscious a couple hours a day and a single mom of a two year old. I remember fearing my son would get into my medicine, so I bought a lock box and kept them in it. One morning, I woke to my son feeding me pills. He was maybe 3 at the time.

Talk about Fear! I went to my doctor and told him I couldn’t be that out of it all the time. He told me that is how we treat this illness. It’s the only way to control the pain. I wasn’t going to put my son in that position again. I left that doctor. I did not see another one for 2 years out of fear. I found a new boyfriend in that time and warned him that though I may look healthy, I’m not. We raised my son together, and I focused on my boyfriend’s illness. HE was supportive, but I was able to go through nursing school and start my career. When my illness once again took over, his support dwindled. Other issues took over.

My family had always been distant. We were not that close, see each other every week type family. Or I was never that type of daughter. It was not until I divorced that man and needed a lot of physical support that my family stepped up. My mother took me to doctors appointments and surgeries, she helped my children with sports and marching band.

She has helped us financially at times when we really had no idea what we were going to do. My current fiance is a dream. He cooks, cleans, works, massages, dresses and undresses me…

Having this support does not make you weak. Asking for this support does not mean you are useless. It means you are strong enough to recognize you need help! Trying to do everything on your own and crashing because you pushed too far is actually the opposite of showing strength in my mind. Its showing obstinance, defiance and bullheadedness.

All are admirable qualities when fighting an illness like this, but will not help long term. Surrendering to your limits, practicing Radical Acceptance to borrow from my colleague’s article, is the height of strength. This also gives our caregivers a family member that they do not have to come home and fear every day.

Burnout is the biggest issue our caregivers face. We have to keep doing for ourselves, forcing our bodies to move. That means, often times we fight that very support we are offered. Through time, it slowly (and sometimes not so slowly) goes away. The people who do not understand that we are just trying to push ourselves often are offended that we refuse their help.

The words of support offered by some are unintentionally hurtful as well. I think in those cases, we have to look at the intent of the words and not the words themselves. Its almost like when a family member dies and all we know to say is, “well, at least they arent suffering anymore!” That’s not helpful. We know that’s not helpful, but we always end up saying it anyway. Same things go for family and friends who say things like, “well you just need to move more,” or “You need to eat better!” Sure! We all do! So do you! We don’t need that pointed out, but what else can they say? It’s not like their words can cure us. They just want to be helpful.

If you have supportive family then its the biggest blessing and the greatest weapon to fight the illness

So, the next time your family reaches out to help or spend time with you, invite them to your bed. Have them bring their jammies and popcorn. Let them see what your day is like. They might enjoy themselves. I also urge you to support your family support. If nothing else, write them a note regularly and let them know how very much you care for them.

Let them know that without them, you would be that mess I was back at 21. Tell them you love them and that if you had the choice you would be caring for them the way they are for you. Let them know any way you can that every tiny thing they do for you makes you love them that much more. Tell them you love them and let them help you!

To my family, I love you so very much! Thank you for all of your many many helping hands and kind words of support! Thank you even for the not so kind words when you were pushing me to support myself!

If you are just starting your new life with Fibromyalgia, it is important that you realize that your family’s lives have just turned upside down as well. As much as you don’t want what was just handed to you, they don’t either. They would like the old you back too. My daughter thought I was dead. She didn’t understand and neither will they.

You aren’t the only one who has just developed a chronic disease, your family did too.

While you are learning what is happening to you, they need to be included in that experience as much as possible.

1. Tell them how you feel. Explain the pain to them. They may not understand, but try this. Try to get them to imagine a woman giving birth and the highest pain she feels right before they give her the epidural, or a man passing a kidney stone. Now imagine that pain only higher, and imagine it all over your body 24/7 and explain to them, that is your pain. Then ask them to imagine being as exhausted as they get after they have had the hardest day they have ever had. Then ask them how they would feel if they were that exhausted all the time with no relief. Then ask them to imagine red ants crawling all over them biting them as they went along the way. Then tell them this is how you feel 24/7, but this is only part of what you feel. You also have brain fog, loss of memory and you can’t sleep even though you are exhausted. Even if you do fall asleep, you are more exhausted when you wake up then when you went to sleep.

2. Take them to your Doctor appointments. If you have a psychology appointment, they may need one too. You aren’t the only one having a hard time dealing with this.

3. While you are going to exercises, take them with you. It won’t hurt them to exercise.

4. While you are learning meditation, they can learn how to meditate too and you can set-up a section in your home and a time when you do meditation and relaxation together.

5. Take yoga classes together and then do yoga at home.

6. Get massages together. You never know. They might really enjoy a massage.

7. Take walks together, even if you are in pain, include the dog. He likes to be included too.

8. Talk together. Ask your family how they are doing. Talk about it with them. Don’t let it be the big elephant in the room. Talk about each other’s day.

9. Don’t isolate yourself. You are creating a problem by isolating yourself and closing off conversation. You can’t communicate if there are physical walls between you.

10. Work together on making your family unit still work. You have a disease, but it doesn’t have to rule your life and ruin it.

By Deb Lundquist from Your Fibromyalgia, LLC

Tips to Understand Someone With Fibromyalgia

We asked to our community “Living with fibromyalgia and Chronic illness” a question “How to Understand Someone With Fibromyalgia? Give your suggestions to non-fibro peoples” and they shared their thoughts on it, We have compiled their answers in the post below.

Here is what community share it with us:

Naomi Goldsmith says: Everyday is a struggle please know we are trying our best. If I have to stay in bed for the day please don’t envey me I’m in bed because I over did it the day before and my body needs to recover

Tonya Lee says: Basically I tell people to imagine having the flu and a hangover at the same time. Then times it by 10.

Jessica Streed-Puddicombe says: I think it depends on what you mean by “understand someone.” We can tell people what our symptoms are, aches & pains, etc. Like saying “I have a headache, or I getting shooting needle,like pains”, etc. Though subjective, it gives a kind of specific answer. Then you move on to explaining that you experience many of these symptoms all at once. Some of the other symptoms that are harder to express, the “it feels like” explanation. Then moving on to try to explain the fatigue that goes beyond feeling like you didn’t sleep well for many nights. Then trying to explain the depression you experience. As much as you explain this to a person, they will hear the words but unless they have experienced these things or the “it feels like…” comparisons then it’s hard to understand.However that is just part of the equation of understanding someone with fm. Beyond the subjective information, how to get someone to understand how this affects every aspect of our lives is more difficult . To fully understand someone with fibromyalgia you would have to be able to be that person, if only for a day. Unless you live it, I’m not sure a person could understand. There is such a profound impact on our lives beyond the physical pain. The kids events that have to be missed, the family get together you can’t make it to, not being able to sit in church on a beautiful day with your family, the housework that can’t get done, the hobbies we’ve had to give up, our careers that had to be left, etc. and then add the guilt we feel for all of that as well. To understand it might be to have to feel it. I think even our loved ones that we think understand it don’t truly grasp what it truly is like. They see the sleeping all the time, the lying on the couch because showering feels like a chore, the dirty dishes in the sink, the dirty laundry piling up, and they don’t understand the energy it takes to try to even do one task. They listen to us “whine” about our pain even though we try very hard to keep it to ourselves but meanwhile might be rolling their eyes or thinking, “really?!?!” Unless someone can “walk a mile in our shoes” I don’t think others will truly understand. But God bless those we love who try very hard to understand!

Jolynn Stoumbaugh says: Listen don’t judge. If the person is someone close to you do research, ask questions. Just be there for that person unconditionally. Compassion is so important.

Don Weitzel says: You wake up every morning and take it as it’s threw at you brain fog and no muscle strength with neck spasms .but always. Keep in mind some one else has it worse …I know sometimes I hardly believe it myself . this desease is not for wimps just have to dig deep and fight it or it will take over your life .

Dottie Hanussak says: Very interesting question, and I had to stop and think about it. I do not think there is a way to understand someone with Fibro unless you have a close enough relationship with the patient to have that patient speak freely to you about the disease and what they feel as to pain. Out of 4 girls and 2 boys, all in their mid 40’s and up, only 2 of them get it. I have taken to sending them anything I find on FB or elsewhere that describes Fibro if it matches how I feel. The other 4 are finally starting to get it.

Phillip Chamblee says: There is no way anyone can come to understand this I have had it for years and I still dont have a clue how to explain one day you fight the next your ready to end it there is no rime or reason for this and after tears and years of pain family or the first to judge you I have about lost everything and they are slipping away and this may be mean but just dont care too much anymore

Julie Canny says:The best way I’ve been able to explain Fibro is that it is like having the flu every day. Severe body aches, weakness, nausea, headache, lack of appetite, lack of energy, wanting to die, guilt for not getting things done.

Angela Mcevoy says:Believe them..help them as much as possible. Offer assistance with chores. Cook a meal for them. Don’t stress us out. Don’t judge. There’s alot.

Sharon Kaplan says: I don’t know if it’s actually possible to describe in detail what we go through. Our battles are our own. We are the warriors of our lives. Pain is our enemy and constant companion. Yet we get up every day and we fight. For our lives. Our sanity. And for the belief that it will get better.

Tina Louise says: Tell them is like being beat with a baseball bat! How would it feel after the bashing! Yep that pretty much explains it all

Holly Olufs  says: Understand that they are having to find themselves again. They are having to greeve over the loss of their old life and find a way to live this painful, exhausting, and confusing life and still feel useful without being useful. Educate yourself about it. Don’t expect us to handle your misunderstanding and judgement very well. We already have too much on our plates.

Sparkle Johnson says: It’s a everyday constant pain but u learn how to control it… you live it don’t let it live you. I have my good days and bad ones but most importantly speak about it with someone who has it and maybe they can give you some advice that can help you.

Kate McPhee says :Do you ever just feel like no one gets it?! They say they understand, but really what do they do to understand. They don’t let you just vent, and when you do, you feel like you’re just complaining and whining about it. I don’t talk about it to get pity. That’s the last thing I want. I talk about it, to try to make people aware of it. To make them understand, I’m not making it up… I really do hurt ALL the time. I really am exhausted ALL the time. I really do struggle to get through the work days. And when I’m home laying in my bed, I feel guilty because I should be cleaning the house or doing laundry. I don’t want to be like this. I want to be normal… whatever THAT is.

Kelly Campbell says: You can’t. You have bruises covering 100% of your body. Every bone is broken (yes, even the three little ones in your ear). All tendons and ligaments have been detached from muscle and bone. There’s a 6th grade drum ensemble practicing in your head. Oh and you’re on fire. But you don’t want to bother people so you say NOTHING, suffering in silence when all you want to do is scream. You become a great actor and your go-to line is, “I’m fine,” cue the smile.

Share your thought with us, if you want to add your answer, put it in the comments below…