Chronic illness – It. Is. Always. There.

June 4, 2011

One of the most exhausting parts of having Mixed Connective Tissue Disease, or any chronic illness, no matter what it is, is the unrelenting presence of it.
It. Is. Always. There.

It consumes you. It consumes your mind. It consumes your body and you have to do everything you can to not let it become your everything. You have to keep busy, you have to have good conversations with people about anything else. You have to work and hopefully enjoy what you’re doing and keep your mind occupied enough that you don’t dwell on your sickness. And sometimes, you get drunk.

And for a while you laugh, and you dance and you talk rubbish with friends and you talk to strangers who don’t know you have an illness. Then the next day you pay for forgetting, but for the moment you have peace. Your mind forgets and is quiet.

I have written before about the grieving process you go through when you are diagnosed with a chronic illness. Grieving the person you were and the lifestyle you had. Sometimes it still flattens me when I realise that I will never be the person I was and the more people I meet, they will only ever meet the sick me. They will never know the ‘real’ me.

But what I think is harder is knowing that with my friends and family- MCTD will always be on the tip of their tongues. They will never think of me without it. I feel like I’m losing my identity and the glaring focus of who I am, is my illness. This is a hard thing to explain, a hard concept to pinpoint but when I speak to my mum, my sister, my Nanna, my aunty, my friends – of course there is concern and interest in how my health is – but I just wish we could strip that away and I could know what they used to think about when they saw me or spoke to me. What used to be the first thing they asked me about?

On second thoughts I think it used to be – are you seeing anyone interesting? So maybe this distraction isn’t so bad 😉

A number of times recently I have spoken with good friends or one of my sisters and had a real conversation about life and issues and people and them and I hung up the phone or walked away realising – we did not discuss my MCTD at all. More than that, I don’t think it crossed their mind. Even better, it didn’t cross mine. Perhaps this is a sign that as time passes and people adjust to me with my autoimmune disorder, they realise that things won’t change and it comes off the hot topics list. I could live with that. I know that if I needed to talk they’d listen, but maybe, just maybe – I won’t lose my identity after all.

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6 Responses to “Chronic illness – It. Is. Always. There.”

  1. di connell said

    I am one of the aunties and I just want to say that my first thought of my niece is her bright bubbly personality. Sure there are times she is feeling pain and feeling down but I just want you to know that my first thought ALWAYS is what a bright, positive person she always is and so much fun to be around. She is amazing and no we can’t forget about the MCTD because that IS a part of her now BUT MY first thought of her is what a beautiful person she is and her illness will never take that away.

  2. Lisa said

    Hi, I love your blog!!

    In fact, you are the Australian copy of me! 🙂 I am 27, got MCTD (diagnosed 7 yrs ago) and have always continued to enjoy my life and look ‘on the bright side’.

    I am thinking of starting a blog in my native language (Dutch) to make peers aware of what it is like being young and living with a chronic illness. You are a great inspiration. Keep up the good work!

    If ever you want to digitally talk to someone who will never think of asking you if it is contagious (yes I have had to answer that question a zillion times!) email me!

    Regards, Lisa Kamphuis

    • Hi Lisa. Thanks for the message and nice to meet you. Thrilled you like my blog and definitely give it a go yourself. I’ve been guilty lately of not writing…work is so busy. But I intend to soon. Yes let’s stay in touch. Naomi

      • Lisa said

        Hi Naomi, that’s a quick reply! Am writing my first blogpost right now. Have to think of a good blogname, mctd.wordpress is already taken 😉 .

        I understand that juggling work, disease, social life AND blogging is often a bit daunting and sometimes nigh impossible. Resulted in a (mild) flare up for me a few months back. So, take your time!
        Lisa

  3. Feeling Sad confused and scared said

    Well it’s been eight months since I’ve been diagnosed with MCTD along with RA. All of my symptoms came on all at once, within days it was full blast. It first started with red blotchy spots all over my thighs and arms. Then hours later my right knee swole up then the left knee swole up and they were so painful I could barely walk. After that the fever came during the evenings. Then after three days every joint in my body was swollen and I was in major pain. My family took me to the ER to find out what was happening to me. Several test were taken then it was clear. The Drs discovered I have an autoimmune disease. They didn’t know what type at that time. So I followed up with my family doctor who referred me to a Rheumatologist. It was there that they realized I have RA and MCTD. I’m now taking Plaquinil, Methatrexate and Predisone. Im now free of inflammation and pain in my joints except for my wrists. My wrists are always imflamed and painful and it seems to be getting worse. I can’t button my paints, tie my shoes and it is so depressing that I hate to mention but it is so difficult and painful to whip my behind because my wrists are hurting and seems to be loosing the strength I once had in them. My finger tips have started tingling and becoming numb on a regular basis. I feel like my life as I once knew it is ending. I am becoming more dependent on my family to help me do simple things I use to do. I find myself crying all the time fearing what other problem may come about. What’s more confusing to me is that in the beginning with this illness made its debut my family doctor told me that she always known that my body was always producing large amounts of antibodies. She said it was not a concern at the time because I wasn’t having any problems. So when my illness came my doctor wasn’t surprised. I feel so angry. Almost like she could have told me that it was a possibility this illness was going to show it’s ugly head. These days my mind is all over the place. Some times I find myself snapping at my family or becoming so impatient with people. I cry at the drop of a hat. And loose sleep cause I can’t get my hands positioned in a way that’s comfortable. My doctor reassures me that keeping my regular monthly appointments is the key to keeping a watchful eye out for other things that could become a problem. I know I may have rambled on about my illness but had to let out what I’m feeling. Thank you all for taking time out to listen. It helps a lot knowing that I’m not alone with this.

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