Top 10 Things NOT to Say to Someone with ME/CFS

For those of you who know me from the online world, you might think of me as a snarky, snyde and sarcastic rabbinical student bent on causing trouble. All of that is true, but what you don't know about me is, I am also sick.

But, you don't look sick?!?

In truth, my love of social media developed from a long bout with ME/CFS that began for me in the year 2000. For those of you who don't know what ME/CFS is, I invite you to check out the FAQ section of the Whittemore Peterson Institute, or head over to the site of the CFIDS Association of America.

While my hope is that H2H Interface provides a place for a wide variety of discussions and beliefs from Jews across the religious spectrum, I would be lying if I denied the fact that I am also equally interested in creating a space for chronically ill and disabled Jews to find support, friendship and a few much needed laughs.

For those on the Jewish family tree who find yourself rowing along beside me in the same broken boat, I invite you to find that space by adding your voice to our discussions on our forums and/or consider contributing an article or poem to H2H for publication.

For those of our tribetastic members who live with ME/CFS, this one is for you:

TOP TEN THINGS NOT TO SAY TO SOMEONE WITH ME/CFS

10. Have you tried Crystals/Green Tea or {insert pseudo-science cure]?

Please leave the medical advice to the experts. People with ME/CFS have been diagnosed by qualified medical professionals, and most of us have spent thousands of dollars (of our own money) on pain and fatigue management. Your comment that “Green Tea” will suddenly “get me back on the slopes” is demeaning and hurtful.

9. But, you don’t look sick?

People with ME/CFS can look perfectly normal on the outside, but feel terribly unwell on the inside. So, unless you’ve lived with someone who has ME/CFS, you will probably never see the physical realities of this illness. But really, doesn't every man love waking up to a night sweat, or the thrill of carrying his girlfriend to the bathroom?

8. I’m tired, too.

ME/CFS is a serious, disabling and chronic neuro immune illness characterized by debilitating fatigue (experienced as exhaustion and extremely poor stamina), neurological problems, and a variety of flu-like symptoms. ME/CFS is not about being tired.

7. My [insert relative] had that, and she manages just fine!

The effects of ME/CFS can and often do manifest themselves differently from one person to the next. Measuring the extent of a person's disability against the condition of another person is unjustified and insulting.

6. You’re just doing it to get out of {insert event}.

People with ME/CFS have to prioritize their lives around their energy levels. This often means having to make the decision between changing your bed linens or calling your best friend. For someone with ME/CFS there is no option to do both.

5. You’re just depressed.

There is a tremendous amount of loss that someone with ME/CFS experiences when first diagnosed. Many people lose their jobs, lose their friends, lose their independence, however, depression is NOT the cause of ME/CFS. In fact, most patients with ME/CFS struggle to maintain hope even when they are completely bedridden.

4. You would feel better if you exercised more.

Fact: People with ME/CFS worsen after physical and mental exertion. All this statement reveals to us is that you don’t really care enough to read a basic FAQ sheet.

3. I wish I could just lie in bed all day.

No, you don’t. Contrary to popular belief, television is not that good, and you can only spend so many hours on Facebook before you go stark raving mad. ME/CFS is boring and isolating. You spend all your time staring out windows, wondering how it is that some people can walk more than five blocks without triggering a flare. How exactly does this seem like a better deal to you?

2. At least, you’re not going to die from it.

This one is frustrating to me as an advocate. While there have been few long-term studies on the progression and morbidity rates of CFS, research has indicated that the average ME/CFS patient will die 25 years earlier than the general population. In addition, current research indicates that ME/CFS eventually morphs into cancer - a byproduct of immune-dysfunction.

1. You're here! You must feel better!

For those with chronic illness, there is no cure, and hearing a comment such as this one proves that the illness is not understood--and that no effort was made to understand it. Becoming accustomed to an illness is a personal journey that everyone makes at his or her own pace. People with ME/CFS learn to adapt their lives around their disability.