Recently, I had two of the following comments said to me:
- I know someone with fibromyalgia and she’s able to wake up early in the morning and work a full time job
- I’m in pain lately, I must have fibromyalgia
These comments are not only insensitive, but incredibly frustrating to hear. First of all, in response to the first comment, everyone’s bodies are bio-chemically different, and therefore, the way I experience fibromyalgia and chronic fatigue is much different from the next person. On top of that, I also suffer from severe back and neck pain from my scoliosis curve. And then on top of that, I also suffer from anxiety and depression. I worked full time in the corporate world for 7 years before my body completely broke down and had to go on a disability leave, which some of you know, resulted in a law suit because my former employer didn’t believe me. Every day, I DRAGGED my body out of bed at 630 in the morning, but because my adrenals are so fatigued and so far gone, my body doesn’t just jump out of bed in the morning because I have no more cortisol being released to do so, and therefore, it takes me body close to 3 hours to actually function. On top of that, I would wake up in SEVERE pain every morning, so all I could manage to do once I was up was to get dressed, brush my teeth, throw my hair in a ponytail, and walk out the door. My showers were done at night (but not every night!), I never wore makeup (I did not look as professional as I could have), and I grabbed my coffee on the go and my lunch at work. By the time I got to work, I had already taken my antidepressant medication and INCREDIBLY STRONG narcotic pain medication, yet once I arrived at work at 8 I was EXHAUSTED, as if I just ran a marathon. I would pop pain meds throughout the day, lean against a heating pad, cry in the bathroom from the pain and fatigue, then go home and nap on the couch until I got enough energy to make a quick dinner, then get back to the couch, then bed. So, as you can imagine, this wasn’t easy to do, especially once my hours began to creep up to 45, 50, then eventually 60+ hours. Imagine the pain of being run over by a truck, the fatigue of the flu, and being an emotional wreck, and that’s what my weeks were like. Hope that helps clarify why I am now not able to go to a regular corporate job. Luckily, I was able to go back to school and pursue my newly found passion, and I’ll live much closer to work, should be able to sleep in to heal adrenals, and have more knowledge now in order to manage these illnesses AND work to bring in an income.
In response to the second comment, I don’t discount whether you may or may not have fibromyalgia, however, unless you have insomnia every single night for at least 3 months (basically don’t sleep a wink, because I had this for 1.5 years before I was diagnosed), wake up feeling like you have to roll out of bed and drag your feet with a 200 pound man on your back, and feel as if every muscle, tendon, and ligament in your body are in excruciating pain, and also, have many of the other symptoms that go along with fibro, i.e. the 18 tender points, brain fog, concentration issues, PMS, the list is 50 symptoms long, then no, I don’t think you have fibromyalgia.
So, please, before you open your mouth and say one of these 10 things to a fibromyalgia or chronic fatigue sufferer, think before doing so:
10. We all get more aches and pains as we get older. The pain of fibromyalgia is much more severe than the normal aches and pains associated with aging. Little things that shouldn’t hurt at all can be excruciatingly painful. Plus, most people develop FM long before they should be experiencing age-related aches and pains.
9. I think I have that, too – I’m always tired. This statement shows a basic misunderstanding of the severity of the fatigue associated with FM. The fatigue of fibromyalgia is so much more than just being tired. It is an all-encompassing exhaustion. You are drained of energy – like someone pulled your plug, cutting of your source of power. It’s kind of like taking the batteries out of the Energizer bunny.
8. My friend has fibromyalgia and still manages to work. Maybe you just need a job (hobby, etc.) to take your mind off the pain. Translation – you must be lazy. The fact is, the severity of FM symptoms varies. Some people have fairly mild symptoms and are able to continue working. Some continue working longer than they probably should because they have no other choice, but they suffer tremendously. Others are so disabled they are confined to a wheelchair much of the time. While getting involved in a project can help to distract your mind from the pain for short periods of time, if you have a more severe case, it doesn’t work well enough to allow you to consistently work a 40-hour week. And it doesn’t help dispel the extreme fatigue that usually accompanies FM.
7. My doctor says fibromyalgia isn’t a real disease; it’s just a wastebasket diagnosis. First of all, this doctor obviously hasn’t kept up with the latest research, which clearly demonstrates that FM is a very real, physical disease. Also, to date the FDA has approved three medications to treat fibromyalgia and they generally don’t approve medications for imaginary illnesses. There are a few doctors who will tell patients they have fibromyalgia if they can’t figure out what is causing their symptoms and just want to get the patients off their back, but I have to question the ethics of a doctor who would do that.
6. If you got more sleep, you’d feel better. Well, duh! One of the major problems with fibromyalgia is that something prevents the body from going into the deepest stage of sleep, when the body naturally restores and replenishes itself. Even if you manage to stay asleep for several hours, you’re most likely not going to awaken feeling refreshed. And most sleep medications do little to help you achieve that deep sleep. They may help you get more hours of sleep, but probably will still not give you the deep sleep you need.
5. I read about this new product that cures fibromyalgia. This can be one of the toughest comments to deal with because it is usually said by well-meaning friends or relatives who genuinely want you to feel better. The products are frequently some kind of “natural” supplement being sold through a multi-level marketing plan and are very expensive. If those making the suggestions are casual acquaintances, I generally just tell them I appreciate their concern and will look into the product. However, if it’s someone closer to me who is likely to keep asking if I’ve tried the product, I go on to explain that there are dozens of products out there claiming to cure or at least improve FM and I just can’t afford to try them all. Read Let the Buyer Beware for tips on how to evaluate product claims.
4. At least it’s not fatal. My first thought in response to this comment is always, “Yeah, but sometimes I wish it was. At least then I’d know there was an end to the pain.” I rarely say that, though. Of course I’m glad it’s not fatal. But that doesn’t help reduce the level of my pain or the depth of my fatigue. Nor does it help to raise research funding or bring attention to the needs of FM patients. Understandably, people tend to be more interested in preventing death than in improving the quality of life. Maybe I should start actually saying what I’m thinking when someone makes this comment. At least it might get their attention.
3. You just need to exercise more. Often this is another way of insinuating that you’re lazy. This comment in particular has always bugged me. Perhaps it’s because I used to be a competitive soccer player. If more exercise were the answer, I’d be all over it. Yes, exercise is an important component of any fibromyalgia treatment plan, but it’s only one part and it has to be approached slowly and carefully to avoid triggering a flare. Read Fibromyalgia and Exercise for more information on how to incorporate exercise into your FM treatment plan.
2. But you don’t look sick. This comment puts the FM patient between the proverbial rock and hard place. If we let ourselves go and show how we actually feel, people are uncomfortable and don’t want to be around us. On the other hand, if we manage to fix ourselves up and put on a brave face, no one realizes we’re sick. If you think about it, most chronic illnesses are invisible. My mom suffered from Graves’ disease about 15 years ago and had to have her thyroid radiated, so she now barely has a thyroid, which means rather than being hyperactive, her thyroid is now hypo, which means it’s underactive. This causes many health issues, which you wouldn’t realize if you just looked at her and didn’t know this about her. My brothers both were deaf as children but you never would have known. My older brother suffers from a cyst on his thyroid and has chronic back pain, again you wouldn’t know! Just because someone doesn’t have visible sores or a crippling deformity doesn’t mean there’s not a serious illness just under the surface.
1. It’s all in your head. This is the all-time worst and most insulting thing you can say to someone with fibromyalgia. I used to launch into an explanation of how FM is a very real physical illness, complete with symptoms, etc. Now I simply say, “You’re right, it is in my head. Researchers have found that there is a problem with how my brain processes pain signals.” Enough said.
Don’t get me wrong, this isn’t a “I have it so hard please feel sorry for me post” because that is NOT how I feel about these illnesses, I am actually incredibly grateful that it’s not something more serious and more progressive. On top of that, I truly believe these illnesses brought me to where I am today, and to be the person I am, so I have accepted my health situation, and do the best I can to live my life to the fullest. I’d just like to spread awareness to those who may not know what to say to friends or family with these illnesses – please think before speaking.
I was able to sleep in Saturday, Sunday and today, so my pain and fatigue are a bit better (we’ll see what happens when I step outside in the snow and -10 weather though!) so I will be headed to run a couple errands today before class tomorrow.