Invisible illnesses are just as debilitating as other more visible illnesses and disabilities, possibly more so with the lack of understanding and compassion because the person looks completely normal. If someone gets out of a parked car in a disabled parking spot and walks away, they are immediately judged that they are parked there illegally. There is no consideration that they may have a disability that is not visibly apparent. Some invisible illnesses do not have as much recognition as others. If someone tells you they have cancer, you may not have been able to see they were ill, but do not think ‘It’s all in their head’ or ‘They don’t look sick’ and discount their ill feelings, like so many of those suffering with less well known illnesses receive as a response. People are always telling me that I look great because I do not look sick, but I am actually quite ill and it is just as difficult for me to hear this as it is for people to understand that I am sick.

I have suffered, largely in silence for ten years since being diagnosed with fibromyalgia in my early twenties. I write for the first time about my personal struggle and hope to bring some understanding with May 12th International Fibromyalgia Awareness Day to this and all other invisible illnesses including Chronic Fatigue Syndrome, Lupus, Chronic Pain, Migrane headaches, Mental Illness, Multiple Chemical Sensitivies, just to name a few. There are unique challenges to each of these illnesses, but most share the perception of many around us who feel that because we look normal, we are not sick.

I am not an activist for this illness, not having been very outspoken about it in the past. In fact many people outside my close family and friends reading this may be surprised to even find out. I am often hesitant to tell people I have this condition, afraid of their reaction, and have often left it unsaid in the past due to a lack of understanding. I am trying to live my life as close to normal as possible, although this is quite difficult much of the time. I write this from personal experience, a testament to those friends that have stuck by me and even to those I have lost because of this illness, trying to give some insight into how difficult living with this really is.

Since I do not look sick and my illness is not well recognized, it means various things to people from ‘it’s all in her head’ to ‘she’s lazy’. Anyone who knows me well enough though, knows it is the illness rather than else as I would much rather be out having dinner with friends instead of having to cancel at the last minute because I feel too unwell or with my strong work ethic, having to call in sick yet again. There is a large guilt factor that comes with any illness when you have to say ‘No’ either in advance or at the last minute and unfortunately there is a large demand on us by others which we have to learn quickly to adapt to when ill and hope they will understand.

There is pain with fibromyalgia. A lot of pain and believe me, it exists. It is a wandering, aching, throbbing and occasionally stabbing pain that affects the entire body often all at once. That is my description, although others may have a slight variation because that’s one of the problems with this illness. The symptoms vary from person to person in their similarity and severity and are subjective so there is no objective way to measure the pain or any other symptom at this time. I have been denied disability insurance claims multiple times over the years because of this. No one can see it, so it does not exist.

The stiffness that is also a common characteristic can be just as unbearable as the pain. It often wakes me up in the middle of the night because I’m unable to move. If I have been sitting in the same position for any length of time and forget to move and stretch slightly, I am not able to just jump up and go, but must gently ease out of the chair. If I have been sitting on the floor, such as recently training my new puppy, I need help getting up by either a helping hand or an immobile object to raise myself up. I need to shift positions, stretching my muscles out constantly or risk excruciating stiffness and subsequent pain.

The fatigue is my most debilitating factor at this time as the pain has subsided over the years with the course of various treatments, a victory I am incredibly grateful for. Even so, I am exhausted the majority of the time and this seems to be the hardest for most people to understand because they have experienced being tired too, but recover after a good night’s sleep whereas I am just as tired even after sleeping ten hours. The lack of energy and fatigue can be so debilitating that it is difficult to do many day to day activities. Just getting out of bed or having a shower can use all the energy of the day for some sufferers.

When I describe the illness to anyone who is not aware of it, I discuss the pain, stiffness and then the fatigue, even though my pain is less now, most sufferers experience this and it is one of the trademarks of the illness. I rarely go into other factors, such as the sleep dysfunction, anxiety, depression, irritable bowel and bladder, impaired memory and concentration, known as brain fog or fibrofog in the fibromyalgia community and the many other symptoms that are experienced.

Sadly of the 4-7% of the US population estimated to suffer from fibromyalgia, the majority are women. This is disheartening in so many ways as these are the mothers, wives, caregivers and they are largely put aside as complainers or hypochondriacs, not receiving the medial attention and support they deserve and families are suffering for it in many ways. Interpersonal relationships are tested as with any illness, even more so if there is any lack of understanding. There can also be severe financial consequences with many being forced to turn to social assistance programs. Men suffering can have difficultly accepting this aspect of their illness, because their role as provider has now changed. Women also have difficulties accepting their nurturing capabilities being affected and especially those with the super-mom ideology. The stages of grief are evident in this illness as with any other.

I have been fortunate. My illness has not been as severe as it could have been, or could be if I am not careful. I am not bedridden and have largely been able to keep working but taking some time off during flares, which are periods of worsening symptoms. I have been able to continue with a social life, albeit much more limited than previously. I’ve gotten married and planned the wedding, which I would never have been able to without the help of my family and friends and I cannot be more grateful for their support. A support network is so crucial in any illness and it is tragic that many with invisible illnesses loose so many friends and family.

Even with having a less severe case than others, there are still so many obstacles to overcome and it is a constant learning process to discover what works and what doesn’t through trial and error. I am learning when to stop and rest now after many years of pushing myself too hard and have had to take time off work several times in recent years. Unfortunately it is only to return to everyone telling me I look great when I actually am still feeling quite ill. I grit my teeth and smile and say I’m feeling a bit better because they are looking at me like I just had a nice long holiday. I want to scream at times because I was practically bedridden, barely able to take care of myself and struggling to prove to the disability company I was ill. My house stayed disorganized and unclean until finally a day came that I had a bit more energy, enough to try to repair some of the damage, only to crash again the next day because I did too much. I rarely left the house except for appointments, and was barely social during those months with a few exceptions which only made me worse. Some holiday.

I know they mean well, those that tell me I look great, but it is such a damaging statement. It invalidates all that I experience and makes me feel that because I look fine, I should feel fine. For the most part, it’s not that I don’t think they don’t believe me, but that those who say this must assume I feel better or that it might be nice to say this to me or perhaps they don’t even know what to say. Maybe asking how I’m feeling, instead of assuming I’m fine just because I look fine would be a nice start. Although please do not ask this and then say ‘you look great’ afterwards regardless of how I say I am feeling as I often say I am feeling fine when I really am not to avoid any lengthy discussion because of a lack of understanding. Possibly not making this statement at all to someone you are aware has an invisible illness would be much kinder. I like to think that for the most part human nature is kind and that they actually mean well by this statement and are not being malicious, although I have experienced this as well.

I have learned many things since becoming ill. Having been self sufficient and independent in the past, I have discovered that I cannot do it all and sometimes need to ask for help, which I actually do much less than I should. I have enjoyed some good times and suffered through some very bad ones. I have friends and family that support me, but have lost many along the way. I have gained an appreciation for my body’s messages and try to listen when it tells me to rest, which isn’t always easy especially if there are things that have to get done, but I am learning to let stuff go. I am also learning to say no. I have learned to avoid anything negative that wastes the valuable energy reserves I have, including people. I have even started to learn to take it easy and not stress as much, especially about being sick, but this is still an ongoing learning process.

I consider myself lucky that I do not have a more debilitating form of this illness, although on my darkest days, it seems dreadful and impossible to feel worse than I do. Waiting patiently for the medical community to come up with a cure does not seem like an option so I have turned to multiple alternative therapies instead, which seem to be helping. Hopefully by the time a cure is found, I will no longer need it. I try to appreciate the time I feel well but am usually too busy trying to catch up on things left undone for so long which more often than not leaves me crashing the next day. I am learning that pacing myself has tremendous benefits, but am finding it quite the challenge to sit and watch the world go by when I am feeling well and have a little more energy. I am trying to do today what I have put off for too long and am starting to follow my dreams, which I have always known, but have yet been able to pursue. I am only able to do this in small steps and am trying not to get too frustrated that I cannot follow these dreams all at once and that it will take time now, much longer than if I was well. I can only hope that one day I will be free of this illness to accomplish these dreams and thrilled to hear that I look great instead of pained.

Resources:

www.fmaware.org  

www.fmpartnership.org

www.fm-cfs.ca

www.butyoudontlooksick.com

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