I get it……Do you?

What brought this on? I have received several comments and advice (??) about my pain, under the guise of well-meaning concern. So this is my response, a kind of a plea to those who may or may not get what people with invisible illnesses are going through.

TMJ LAksWhat brought this on? Vishruth had some kind of swelling under his eye and I took him to the doctor to check it out. Turned out it was some kind of allergy. My most recent flareup was in the TMJ and my therapist had taped my jaw joint using bright pink Kinesio tapeKinesio taping in general is very effective in containing and reducing flares a.k.a inflammation.

Obviously the sight of someone walking around with a bright pink tape on her jaw is bound to attract attention. So the doctor who attended to Vishruth asked me about it. I told him that I have FM and I get flare-ups in every part of my body and this time it is in my TMJ area and hence my therapist has taped it to contain the inflammation. Were you able to spot a joke hidden in my explanation? I did not think so either so when the doctor laughed and said “That’s Hilarious.” I was shell shocked at his comment as he is actually a very good doctor and does not prescribe unnecessary meds. I managed to recover and said, “Bright pink tape instead of the regular drab white one does look hilarious 🙂 “ I collected Vishruth’s prescription and came back home, obviously disappointed.

I agree that the doctor might not know everything (he is a human being after all) and maybe he is not aware of FM or even taping in physiotherapy. Maybe it is not as prevalent in India as it is abroad. I have used taping and have also seen it used extensively when I trained for and completed the Nike Women’s Marathon in 2007. It was not the lack of awareness that bothered me but the sheer insensitivity of his comment.

I have found that people reciprocate to illnesses that they can either see, i.e. a fracture, flu, cold or a life threatening condition. But for the in betweens like me, the ones that have chronic illnesses but look alright from outside, they are always ready – ready to judge, ready to find fault about why someone is sick, ready to offer solutions. Here is a small list of what I have heard over the years about my illness:

  • You got FM cos you are not exercising, you are doing ________________, you are not doing ____________(Fill it with whatever you want)
  • You got FM cos you took an epidural during labor
  • You got FM cos you had a procedure
  • You must be imagining that you are in pain, no one can be in pain all the time. It’s in your head, you are hallucinating.
  • You should stop thinking about the pain as thinking about it/making a big deal about it is not going to help you. Instead just put it out of your mind and divert yourself
  • I know someone, who knows someone who practices hypnosis or does some kind of magic and has cured cancer, diabetes and every other disease. They can cure you.

I GET IT, people do it cos they are concerned, they are worried and cannot understand how someone, who looks healthy, who is able to manage their chores and daily activities, has some semblance of a social life is not getting better. Maybe they think I am not trying hard to get better or maybe I am not getting better according to their schedule.

Evidence exists that fibromyalgia is a neuro-immuno-endocrine disorder. Elevations in substance PIL-6 and IL-8 as well as corticotropin-releasing hormone have been found in the cerebral spinal fluid of fibromyalgia suffering individuals. So maybe I am like a mutant 🙂 instead of an X-gene, I have the PIL hormone. Instead of super powers, I have super, blow your socks off pain!

I did yoga and exercised regularly but I was diagnosed with Arrhythmia and later slip disk and had to stop yoga. I saw a cardiologist, a neurologist, an orthopedist and several other doctors for all my individual symptoms but no one could provide me with any relief. I even tried Ayurveda and for some reason it did not work out for me. Finally I met with Dr. Deepak Sharan and based on all my previous experiences with other docs who did not believe me, I did not even tell him about my FM condition. He examined me and promptly noted that I, indeed have Fibromyalgia. All the past comments from my previous docs had affected me so much that I asked him, several times whether I am hallucinating or imagining that I am in pain. He said that “Fibromyalgia pain is very real and can be excruciating. If detected early, FM can be brought into control and people actually go back to their old selves with occasional physical therapy and medication. In your situation, even though you were diagnosed in 2008, you have not received any kind of treatment or continuous meds so your FM is chronic. It will take some time and a lot of patience to bring it under control.”

My symptoms are not consistent, they vary every single day. I have stopped working now cos the pain became too much to bear and I was unable to spend any kind of time with Guru and the kids. I became someone that I did not recognize. I started seeing a Cognitive Behavioral Therapist, tackled one task at a time, sometimes pushed myself to do more than I could handle, only to be hit with a massive flare-up, a series of small flare-ups sometimes but I am trying very very hard to motivate myself (which is very difficult), get back up again and again after every fall, to not give up hope and to count my blessings and not the burdens.

I am working very hard trying to build up my resistance and strength, I have moved up from 1K to 2K and now to 5K. I am doing all that I can to get better but it is on my schedule and not someone else’s.

Like I said, I really do get where you are coming from, I get your concern but are you able to get that I smile and move on with my life cos I chose to be like that, I chose to hide the pain and the grimace on my face and replace it with a smile. I am not asking for your empathy or understanding even. All I ask is that you don’t judge, based on what you see. Even if you do, please keep it to yourself. People living with invisible illnesses could do without the insensitive remarks.

Okay, I am done 🙂

Do you want to Get it? Read How to Understand Someone With Chronic Pain

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12 Comments Add yours

  1. Gayathri says:

    Completely agree with you Lakshmi, people only empathise when your disorder is visually perceivable, otherwise you get judged. This is just how society works it seems like. I know someone who had kidney failure and had to get a transplant and is constantly judged because she puts up a brave front and carries on like she has no illness. Keep fighting. Running a 5K and that too with FM is not a joke so be proud of yourself.

  2. Ramya says:

    As you said, if people don’t see your suffering, they assume you are exaggerating. If in between, you do feel better and act normal. They say ‘ See, I always knew nothing was wrong with you, it’s in your head’. I have heard the whole gamut of comments from the mouths of professionals to laymen. I went through a very tough pregnancy with a rare condition and apparently well meaning people close to me made insensitive comments, still do. I really wish people would be more considerate.

  3. Reks says:

    next time someone gives you advice, get their email id and point them to this post. idiots. we see the person inside but we can’t feel what you’re feeling. we can only be there…always. take care man.

  4. sethsnap says:

    Wishing you better days. My mom has fibromyalgia, it’s tough. You deserve a rant. 🙂

  5. Ashwini says:

    Lakshmi : Hugs ! so well written.

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