As you get repeatedly told ‘but you don’t look ill’ and if we do this or that, we would be better, I started to wonder what that must be doing to our way of thinking about ourselves and what that does to our image and our self-esteem.

On June 18, 2018 it was 25 years since I founded the National ME/FM Action Network and looking back over the years I remember the struggles our Network and I have had to deal with because of the perception of ME/FM.

I remember walking with one of our Directors into government offices and the representative meeting us and how dismissive they were. Some would even offer suggestions about how they knew we would be better if only we would stop convincing others and concentrate on ourselves more.

This has changed now but that has only been in the past couple of years. Although the perception has changed, we are by no means in an easier position to get what we need and what is pushing us forward is the united front our ME/FM community has established by not taking “NO” for an answer nor will we ever accept it.

There is a danger of us personally getting lost in the shuffle that a doctor visit can do to you with an unkind and insensitive remark, a friend who thinks you’re disloyal because yet again you had to handle the remarks due to another cancellation of a get-together you had planned.

I realized how important how ME/FM community is to all of us. It is not only for keeping up with medical and research data but also to make us visible to ourselves. By reading others’ stories, it confirms in us that yes, it is real. I am not imagining these symptoms. By being accepted as we are and not questioned about the legitimacy of our ill health, it reaffirms in us that we are not alone and there are those who not only understand but care about us.

It is important to all of us to support each other as we go through the many daily struggles we are going through and don’t become dismissive of ourselves by thinking we are invisible. That is only to the untrained eye and to those who didn’t care enough to educate themselves on your illness.
I get often asked what I would do differently about my illness, if I knew then what I know now. I have made kind of a list, not necessarily in the right order for anyone else but a list none the less.

1. BELIEVE in yourself. If you have a pain or any symptom, then that is what you have;

2. BE your own driver. Don’t let anyone steer your wheel when they are steering you in the wrong direction;

3. When you think you have come down with a flu or similar condition, if it doesn’t go away after a short period of time, get it checked out immediately;

4. GET another opinion, if your doctor plays down your symptoms and doesn’t give you the support you need;

5. DON’T worry about whether the doctor will think you are wasting his time. You are worth it and deserve their attention;

6. WHEN you apply for sick benefits and you get refused see a lawyer immediately. Check to see if initial consultation is free so that at least you can get early advised; At this early stage, sometimes only a letter from a lawyer is all you need to get your benefits;

7. CALL the lawyer to find out if the initial consultation is free, if it is, make an appointment as the information he provides to you can save you a lot of time and energy. You may have to make a few calls to find a lawyer who does consultations free but there are still many that do. When and if you have to go to court, lawyers will make arrangements with you and if the one you have will not, see another;

8. CHECK also if you qualify for a Legal Aid Clinic which is dependant on your earnings;

9. APPLY for disability which first is usually Employment Insurance, followed by Canada Pension Disability, Workmen’s Compensation. Do not take no for an answer. Some employers discourage Workmen’s Compensation as they worry about an increase in fees;

10. ENSURE you get proper medical reports to support your case;

11. CHECK the criteria for the disability you apply for as they are different and it will save you a lot of stress if you know beforehand what the criteria are;

12. to insurance disability, at first it is short term disability and you must prove your cannot do YOUR job. For long-term disability you have to prove you cannot do ANY job. For Canada Pension Disability it is not your illness that gets you your pension but rather how the illness stops you from working.

I hope some of this information is of help to the reader. Just remember that by going on the website of the National ME/FM Action Network under Resources and Legal, there is much information and guides to help you.

I can only stress again how important it is that you steadfast believe in yourself. You are managing your life and on the days you feel you can’t go on, hold on to the fact that you are not alone and we know and care.

Lydia E. Neilson, MSM
CEO, Founder.

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