You are not alone

June 3, 2012

One of the worst parts of being sick, is feeling alone. Feeling as though no-one understands. I am incredible fortunate, as I rarely feel this. This, in part, has to do with my wonderful family, friends and workmates. It also has to do with my understanding and supportive doctor and rheumatologist.

One thing that has become very clear to me after reading countless comments on Facebook MCTD pages and online forums is that MANY people with this illness feel alone and as though they aren't supported by their family and medical team. Every-time I read this I am shocked that people feel that the people closest to them think they are faking or lying or exaggerating. That blows my mind. No-one has ever doubted my pain (to my face ;) ) if anything they often think I'm underplaying it - promise I only am sometimes.

It honestly makes me wonder what goes through the minds of these people who do doubt their sick family member or patient but I also wonder - is it just that, try as they might, they can't understand what it is like to live with a chronic illness, so they say the wrong thing, or don't say anything at all, which is misinterpreted as not caring?

Aside from all this, back to the point of not feeling alone. There is a very special reason I don't feel so alone. It is this, my MCTD WordPress blog.

You will have probably seen the different comments on posts from people who have related to my blog - but usually they are fellow MCTD sufferers. What amazes me, is the amount of people, friends, acquaintances, friends of people I know, and strangers who contact me privately to say thank you and to share what they are going through.

So many people are dealing with their own issues - often medical. And the fact that they have been moved enough to contact me - often starting an ongoing dialogue with me over many months, where we stay in touch about each other's illnesses and lives.

Without revealing any names I did want to share the diversity of conditions that people I know have contacted me about and said they can relate to my feelings/struggles because of these. Many of these are newly diagnosed and these beautiful people are dealing with those initial hurdles when they first find out.

- Multiple Sclerosis
- Epilepsy
- Crohn's Disease
- Lupus
- Polycystic ovarian syndrome (or something similar)
- Behcet's disease
- Bi-polar disorder
- Depression/anxiety

I'll probably think of another one as soon as I finish this - but that gives you an idea of not only what people are contacting me about, but what people are going through.

We're not alone, and thanks to the world, wide web, we can now understand how common these illnesses are and share with people who might understand - at least a little bit.

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7 Responses to “You are not alone”

  1. Susana Basanty said

    Dear Noemi,
    I am also shocked by the amount of people that post on MCTD pages that their families or friends are not suportive or understanding of the pain and weakness of this desease. Could it be that not enough people have heard of it? Maybe this disease is silent and invisible.
    Thank you for blogging about it and making all of us aware, every little bit helps.

  2. The disease is so rare that even many doctors do not understand it. My family does not understand because they are not willing to learn, but they do not doubt my pain. I have a very supportive fiance and sister (who also has autoimmune issues) which makes things so much easier. They make my life tolerable. Thank you so much for your blog… it is great to “meet” someone else with MCTD. I wish you happiness and health. ~ashley from South Carolina

  3. I also appreciate you sharing about MCTD. I had a fellow MCTD’er point me to your blog. While I am not physically affected, my ten year old daughter is. I don’t understand the struggles that some people have with their family or friends either. We have encountered nothing but support since her initial Juvenile Arthritis diagnosis when she was 6. I have encountered some strangers that needed to be educated, but no one close to us. Again, thank you for sharing! We all need to do what we can to raise awareness so that perhaps more people can understand, and also to make the world an easier place for the young ones that are diagnosed with it.

  4. Liz said

    Wow, I found this post it seems, just in the nick of time. I was diagnosed with MCTD in January 2012, and just had my first birthday which I didn’t feel well enough to celebrate out of the house. I actually come from a place where I feel very alone. Though my husband tries to understand it seems sometimes he just can’t. It doesn’t make sense to him how just yesterday I was up and about and able to work all day, and today I couldn’t get out of bed or move my arms or legs because of the pain and weakness. And my birthday was spent on the phone with my parents for hours (who I live very far from, on purpose), as they sat there and tried to beat it into my head that I’m not really sick and that nothing is wrong. My rheumatologist, who I have to travel to the US to see (I live in the US Virgin Islands and there are no rheums here on island) he doesn’t seem to understand the pain either, nor does he return phone calls when I am having adverse drug reactions or a change in symptoms that terrify me. I spend my time online reaching out to others in my situation and trying to learn as much as possible about this condition so I can get through the hard days on my own. So finding this blog, was refreshing to say the least. I appreciate that you are out there posting about your struggles, but even more importantly, your successes. Because indeed, there are both. This disease does have it’s “good days”, and there is hope in living with it. You can go on. I myself have thought about blogging. Perhaps finding yours will give me the push I need to start my own? Anyways, this was my long-winded way of saying thank you. You offer hope to those of us who might not otherwise have a way of finding it on our own.

    All my best,
    Liz

    • Hi Liz,

      Thanks for the message. I hope you’re having a good day. I am sorry that you’re feeling so alone and I’m really happy that my blog is helping you realise there are others of us out there dealing with the pain.
      I am flabbergasted that your parents aren’t believing your illness. All they need to do is do some reading online – or share my blog with them, and they’ll realise that it’s real and no, it doesn’t make any sense – the pain comes and goes with no rhyme or reason but that is the nature of the illness.

      If they don’t believe the pain that you are dealing with – show them your blood works. Show them a letter from your rheumy. I have to just hope when people doubt it it’s because they don’t like to think of someone they love dealing with an incurable illness so it’s easier to pretend it doesn’t exist.

      If you have any other choice for a rheumy….I would change. I know I’m lucky because I live in Sydney and I’m spoilt for choice but if you can source another one who will care, understand and return your calls when it’s really needed then you deserve to find that.

      My very best of wishes are being sent to you Liz.

      Naomi

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