Living with an invisible illness

Invisible illnesses.  You’ve probably heard about them or heard people mention them.  They come in all forms from depression to constant headaches.  They have no physical symptoms and, in most cases, people think you are faking or making it up.

However, they are real and this article is to show that not only does an invisible illness affect someone in serious ways, the scepticism of people to believe that one exists can also cause hardship and stress to the sufferer.

Throughout this article I will refer to my invisible illness, and how some people have reacted to it, and the reactions of some people in the medical community as well.

My illness is called Chronic Daily Headache Syndrome.  In my case, I have a headache 24 hours a day, seven days a week.  It is a pressure headache that sits mostly at the back half of my head and just changes in intensity.

Weather pressure changes can affect it (I can tell when a storm is building up), as can heat, lack of sleep, loud repeating noises (fire alarms, car alarms, building works, etc), the constant chatter of people talking (hence leaving parties/social gatherings early), exercise, and so on.  Stress can also affect my headache.  Music, TV shows, movies, etc, have very little to no impact.

I mention stress because this is a big factor.  I’m not talking about stress in the workplace, but rather the stress of people who think I am faking the headache to get out of something.

I can understand people who don’t understand what I am going through but are still supportive.  It is the ones who refuse to be supportive because they think I am making it up.  I have no physical symptoms and they have to take my word on it, but their instant reaction is that I am being a hypochondriac. And this is what causes the stress because I have to fight with them to try and make them believe that I have a problem.

I can tell them I am seeing a neurologist, that I am receiving treatments, and so on, but it tends to be all for naught, and this causes stress.

I can understand their viewpoint, as people often use headaches as an excuse to get out of things even when there is nothing wrong with them.  I’m not one of those people, and the passion with which I am explaining this issue to you should give you a clue that maybe this is real for me!

Sorry, got into as bit of a rant there, but this is the kind of situation I face all the time.  And it isn’t just me who faces this issue.  People with other invisible illnesses such as depression, bi-polar disorder, PTSD, and so forth face similar scepticism, and it gets tiring very fast to the point where we keep it to ourselves, that, for periods at a time, we stop socialising because we just can’t deal with people, or don’t feel like trying to explain ourselves in case we get into yet another argument.

I have seen some doctors who are sceptical about my condition because there are no physical symptoms.  It took me five years to get someone to order an MRI just to rule things out.

I saw a so-called headache specialist in Melbourne, supposedly the top of his field.  Apart from being extremely rude, dismissive, condescending, and claiming I was trying to rort the Centrelink system for receiving sickness allowance payments, he also, without doing or ordering any sort of tests, said I was a textbook case and prescribed me five different kinds of medicines to take all at once.

Well, the medicines made me lethargic, increased my heart rate, made me paranoid, and didn’t do a single thing for my headaches.  I tried to get a hold of the specialist after only being on the medicines for a few days but his secretary wouldn’t put me through and he didn’t return my call, so I took myself off the medicines before I ended up in hospital from all the side-effects.  I felt so much better once the drugs were out of my system.

I later learned from my chiropractor that this specialist was infamous for prescribing drugs, and once the course of drug treatment was done the patient’s headaches would come back.

So, for all the specialist out there, if we are seeing you it’s because we have exhausted all other options, we are fed up, stressed out, frustrated, and just want it to end.  Don’t be dismissive, don’t be rude, don’t be condescending, and don’t take shortcuts.   Do what you must do to help us find the cause and cure the illness, or at least manage it.

In closing, I would like to say thank you for reading, and I hope this provides some understanding to people of how invisible illnesses affect those who have them, and hopefully through understanding you can help relieve some of the stress your friend/co-worker/family member deals with.


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5 Responses to Living with an invisible illness

  1. michelle chaffin says:

    So much of this is true for me too. 24/7 for over 20 years and most never knew it but friends and co workers support me after they find out. I feel like I am “coming out of the closet” with headaches because I just had to leave my job as a teacher. I am glad we have found a way to talk with each other and support each other even if it is without ever meeting. You have silent warriors with each of us that suffer with you. I love how you wrote this…such a gift in a quiet and gentle way.

  2. Karen Crow says:

    Well written! You pretty much describe the grief that I live with on a daily basis not only from members of the medical field, but also from select family members who think I use the terms “migraine” “chronic daily headache” “fibromyalgia” “depression” or “anxiety/panic disorder” loosely and don’t believe that any of those are real issues, much less issues that I contend with.

  3. Bobbi Maurer says:

    THANKS Anestis. I have the same….24/7 headache that mainly is at the back of my head (sometimes across the forehead area also). I too feel that Dr’s don’t believe me when I say I have them 24/7 since age of 12 (now 35). They seem at a lost of what to do for me. I have had MRIS & Cat scans to rule things out. Dr’s just tell me “it’s a chemical imbalance” and so it is trial & error of meds. Some say it’s genetics yet no one in my family (on either sides) have chronic daily headaches. My mom & dad were always so supportive of me. Boyfriends I’ve had would get angry @ me when I need to back out on plans d/t migraines. You are right about “invisible illness” and not everyone believes all the pain we have. My husband is supportive and understanding- Praise the Lord….but it still sucks to have daily headaches….a lot very intense…for 13 years and Dr’s seem to just give up. I don’t feel they really understand the pain we go through. I am new to this group & really love reading other people’s posts to see if there are things I have not tried yet. I am not giving up… I hope to one day be free from this daily pain.

  4. Jody Reader says:

    I’ve had a similar experience at The Diamond Headache Clinic. They pumped me full of medications and sent me home after five days. This made me feel better for two weeks, and then I was right back to where I started with Chronic Migraines. I was so disappointed! I’m still struggling over two years later.

    I also have a Panic Disorder and Fibromyalgia which are other ‘invisible’ conditions. Fortunately, I have a strong family support (with my immediate family) and a close circle of friends. Otherwise, there are many skeptics. I have lost my job since I’ve had to be on disability for so long. I still have hope to get back to working and my normal activities soon! I miss my walks, bicycling, gardening,…

    I have tried all the typical migraine medications, Botox, IV therapy, and have had a few Occipital Nerve Blocks. I’ve had temporary relief at the best.

    My next step is a Radiofrequency Nerve Ablation of my neck. I have arthritis in my neck, so there’s hope that this will give me relief. Has anyone else had this procedure?

  5. Jeannie Nicotera says:

    Your story sounds all too familiar. I think one of the many things that I hate is that I have lost friends and they think I am just lazy and a big pain in the ass. I do have a lot of supporters like I am sure all of you do. The only thing we can do is take one day at a time and even that is not easy.

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