Understanding that humans are inclined to sympathize with hurts or disabilities they can physically see is a huge hurdle for anyone fighting with an invisible illness.
Because each person’s struggles are unique to their experience, it can be difficult to get friends and family to understand the everyday struggles of living with fibromyalgia.
Strangely, you end up excited when you actually have a bruise, cut, or burn to show off. Those are things people understand.
When I fell in a hole a few weeks ago I was left with a cantaloupe-sized bruise that I proudly showed my husband as if saying…
“Look, I actually hurt.”
But really, it’s not their fault. It’s hard to understand what we cannot see. So it’s our job, as women with fibromyalgia, to explain it when we can.
Don’t waste your time on those whose opinion don’t matter to your life. But give the benefit of the doubt to friends and family who may be struggling to understand our daily reality.
If you’ve recently been diagnosed with fibromyalgia, read my complete beginner’s guide. I go into much more detail on some of the following points and the science behind them.
All that being said, here is a list that can help us explain ways fibromyalgia changes our life.
How Fibromyalgia Changes Physical Health
- You cannot tolerate the same level of physical activity you once could. You are either too tired or in too much pain to be at the same level of activity. And even if you brave it out, you’re likely to go into a full fibro flare.
- Your immune system is compromised. It might be because you spend less time in the sun soaking up those vitamins. Or because you’ve developed sensitivities that weaken your immune system. It could even be because you spend more time around sick people in a doctor’s office. But you’re going to catch every bug that someone sneezes in your general direction.
- All the pain. All the time. And it’s not in your head. Scientists have shown that people with fibromyalgia have elevated levels of substance-P in their blood. This is the same substance that travels through everyone’s body delivering pain signals. We just have more of it than healthy folks.
- You don’t JUST have fibromyalgia. More than half of fibromyalgia patients have at least 7 other related conditions! Many of these other conditions are much more accepted and studied in the scientific world and people will have an easier time understanding them.
- You are weakened. This is from a combination of factors, including limited physical activity and exhaustion. But lifting something heavy is probably out of the question, and there are days when your hairbrush weights 1000 pounds.
- Sleep doesn’t heal or provide rest. Non-restful sleep is one of the most common symptoms of fibromyalgia. And when you’re not getting restful sleep you are exhausted and your body is unable to heal. Because your body isn’t healing, you’re in pain which makes it difficult to sleep. And the exhaustion makes you stress about work/life/kids/etc, which keeps you from being able to sleep at night. And so continues the vicious cycle. The connection between fibromyalgia pain and poor sleep is well-established, scientifically speaking.
- You are exhausted. It’s not the kind of exhaustion experienced by healthy people. It’s more like having the flu. Every day. Forever. And on top of the flu, you ran a marathon. Then stayed up for 3 days in a row. Oh, and the next person who tells you “yeah, I’m tired too” will be lucky to escape with their life.
- You cannot be touched. Allodynia is the feeling of pain from non-painful stimuli. It is another of the primary symptoms of fibromyalgia. Something as simple as a light touch can feel like a punch. A hardy pat on the back can leave your arms numb all day long. Even soft clothing can feel like a cactus rubbing your skin. This is a particularly difficult thing for our significant others to understand. It’s not that you don’t love them or their touch, but you’re afraid of the pain associated with a hug or rub.
- Some of your senses are on high alert! You can hear everything. Smell everything. Taste everything. Fibromyalgia has its roots in central sensitization of the central nervous system. Essentially, fibromyalgia patients are in constant fight-or-flight mode. When your body is trying to protect itself, the senses are on constant lookout for threats that can be smelled, heard, tasted, etc. (source) This means that you’re going to get a headache from that vanilla candle and a rash from the harsh cleaner.
- You develop sensitivities to things that never bothered you before. This is related to the previous point on central sensitization. It is also made worse by our lowered immune system, lack of sleep, and inevitable vitamin deficiency. In my case, this means I’ve said goodbye to most of my earrings and my ability to wear most make-up.
How Fibromyalgia Changes Mental Health
- You have anxiety. It’s pervasive. It could be from poor sleep, constant pain, waiting on the next shoe to drop, a fear of being touched, stress about how your work and family is being impacted, or any number of other causes. But the world you used to know has been replaced by a scary one that causes anxiety.
- You’re depressed. Again, the same causes that bring on anxiety can and do cause depression. “Fibromyalgia and depression are clearly intertwined.”
- STRESS! Most people can lay claim to some level of stress. But a healthy person is not likely to understand the impact of stressing about how your health is hurting everyone around you, including family, coworkers, and friends. Am I doing enough to help myself or not enough? Am I going to get fired? Did I parent my kid poorly because I didn’t have energy to help them? Am I forgetting something important because of brain fog? How am I going to get everything done when I can’t get out of bed? What is my medicine going to cost? It’s never ending!
- Fibro fog is a real thing. It’s like trying to think when your brain is being smothered. I explain it to my doctor like trying to walk through the mud. There are thoughts floating around out there if you can just get a hold of them. On my worst days, I struggle to remember the names of friends and how to spell simple words. It’s frightening and gets worse the harder you try. Heaven forbid you try to arrange your life without a calendar and a notepad. It’s just not going to happen.
How Fibromyalgia Impacts Work Life
- No one believes you have THAT MANY doctors appointments. And seriously, you ran out of sick-leave about 2 years ago. Also, does acupuncture count as a doctors appointment? What about seeing your therapist once every week or two? Also, you’re going to have a lot of doctors for your various other conditions. It’s like having 15 balls in the air and not knowing which one is going to come down next.
- You miss more work than all your coworkers. Also, please see the note on #absolutelynosickleave again. With any luck you live in a country that has something similar to the US Family and Medical Leave Act. This will protect your job. If not, you can only pray for understanding bosses.
- There are a lot of jobs you won’t be able to do anymore. Some jobs require a lot of standing. Others a lot of sitting. Some require a lot of ups and downs. Any of these may be a problem for your particular fibromyalgia situation and pain.
- Fibro fog and working are NOT a match made in heaven. Tasks that you used to do with very little problem are substantially complicated when you struggle to think. Information recall is difficult and doesn’t always work out. All in all, maintaining a job with fibromyalgia is stressful and complicated.
- Your office needs a temperature zone specifically set for you. Since temperature control is one of those things our body sacrifices in order to stay in fight-or-flight mode, you probably go from hot to cold in the blink of an eye. On the other hand, some people stay freezing and others can’t get cool enough. But finding a work environment to cater to your heating and cooling needs isn’t going to happen. You will probably need to invest in sweaters, fans, and space heaters.
- You don’t handle the rigors of the job as well. I’ll never forget my doctor at the Fibromyalgia clinic at the May Clinic ask if I have always been a high-performer. Apparently that’s a pretty common trait amongst those with a fibromyalgia diagnosis. But whether you were or were not, before fibromyalgia, you will struggle to be a high performer now. The stress is likely to make you sicker and your physical limitations will slow you down.
How Fibromyalgia Impacts Family Life
- You don’t have as much emotional energy for your family. This is one of the saddest side-effects of my fibromyalgia. After a long day of work, or a stressful day of being home sick, you just don’t have as much left to give to your family.
- Housework is questionable. Hopefully you find a schedule that works for you in keeping up with housework. But even if you have everything planned to a ‘t’, you’re still going to have flare days/weeks where your schedule falls to pieces.
- You’re going to miss out on special activities. Sometimes that soccer game or family party are going to land on a day when you just can’t get around. Try not to feel too guilty about it. Go to what you can and send your best-wishes to the ones you can’t.
- Your circle of friends will shrink. On top of not having the energy to keep up with a bunch of friends, you’re likely to loose a few. The sad truth is, not everyone will believe you. And that’s okay. You can be extra thankful for the ones who do!
- You will appreciate the little things more. Ok, so this one is a different tone than the other 24. But I wanted to end on a positive note! Hopefully, despite all the negative, you find it possible to appreciate the little things more. To be more thankful for the friends who do believe you. Find grace in your workplace and at home. Love the days where you feel healthy and stop to smell the roses when you need a break.
Pulling it all together
It’s not realistic to think that fibromyalgia will not change your life. In fact, fibromyalgia will change every part of your life!
But if the only thing you can do about it is be prepared, hopefully this list has helped.
If you’re looking for more tips on ways to treat fibromyalgia, jump over to the complete beginner’s guide. There’s a load of treatment options for you to explore!
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