Learning to share the burden of MCTD

November 28, 2012

Ever since I started my MCTD blog, people have commented on how brave I am to share my experiences. I haven’t felt it was brave. I have felt as though it has helped me and others with MCTD and my friends and family to know what’s going on – but not brave. I felt I have been able to hide behind my screen and show the parts I wanted to share. The reality is, until a few months ago – I haven’t had to share my MCTD. 

But a few months ago I started a relationship. My first relationship since I fell sick. What’s meant to be an exciting and happy time, has been littered with pain, tears, fevers, doctor’s trips, and many, many days where all we do is sit in-front of the TV, holding hands.

He knew about my MCTD before we got together as we have been friends for many years and he told me he’d read my blog on our first date. A conversation starter.

Mutual friends have assured me that he knew what he was getting into before we started dating but I can’t help thinking – no-one really knows how tiresome a chronic illness is, unless you’re living it every day.

While he has been amazing and patient, and understanding, I do wonder how someone can choose to be involved in this. My family have no choice, my friends get the bad stuff in small doses and I certainly have no escape from my bad health, while here is this guy choosing to    spend his time with me – while it is definitely making his life more difficult. I don’t get it.

I used to read MCTD forums where people spoke of their supportive partners, and I was jealous of the support, thinking I had to handle it all myself. However, now I know that sharing the burden of MCTD has its own challenges. Thinking about how someone else is feeling about how you’re acting or feeling, or how joint plans have to be altered to work around your illness, thinking about how you’re affecting this person – well, it’s not easy.

Having said that – I feel so lucky. While it’s still early days, he’s still here, he’s still making plans with me and he cares. It does make the burden that little bit lighter. 

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8 Responses to “Learning to share the burden of MCTD”

  1. Beverley said

    nnaaaww – so glad you’ve found someone spesh to share your days with. as for worrying about the shite stuff that happens re. the mctd —– just remember all the people out there, who cancel plans because ——- they’re too tired, too stressed, too down, too otherwise occupied, too “just-can’t-be-arsed”, too busy, too disorganised, too dysfunctional, too narcistic, too everything. it’s an epidemic of toos!! so, don’t fret it, and try not to compare with what you would’ve been and what it could’ve been. just compare with the majority out there, where it’s not all happening anyway? accept the limitations, and appreciate the spesh down-time, the holding of hands, and being REAL. he sounds like a “doer” and not just an empty vacuous “sayer”. not many “doers” left, so, appreciate appreciate appreciate……. and, i wish every spesh thing for you both, however which way it goes… b. :o)

  2. Colin said

    Nomsie. All I can really say are two things.

    One is that I am very pleased for you, and two some people are worth it. Clearly you most definitely fall into that category.

    Nobody knows how long they have on this planet and certainly nobody knows what is around the corner regarding their health.

    Your attitude towards MCTD is commedable because it is always far easier to curl up into a ball and cry rather than stand up and fight. Stay strong, you’re a credit, not only to yourself but also an example of how to live a life with MCTD.

    Col & cats xxx

  3. decimawho said

    I feel exactly the same. When I got really sick I was only 4 months into a new relationship and was made homeless as a result of the illness. I moved in with my partner and I warned her explicitly what it would mean and how sick I was. She ‘took me on’ and to my surprise, nearly a year later she still says it’s been worth it. I don’t understand why a healthy person would want to be with someone who’s severely sick, but they seem to, and the support is invaluable.

    I just followed your blog and I’m looking forward to reading more!

  4. Yasmeen said

    That’s great. He’s diffenately a keeper.
    Can’t really relate to the boyfriend thing (my religion and scoiety don’t go with these things), but I do understand. I’m 17 and I have been diagnosed with MCTD a few months later, but looking at all the pain, suffering and confusion I went through the past years, I think I’ve had it for more than 5 years now. And you might find it weard that I think of these things at this age, but every girl has plans and dreams, right? One of the very first things that occured to me when I found out is if anyone will ever choose to spend the rest of their life with me, and with my disease, that surely comes with the package.
    It’s my first time to visit this website and see your blog, and I really like it. My information is still very limited about MCTD, and it’s nice to hear from people who actually know what they’re talking about and have common pains.

    • Thanks Yasmeen. I’m sorry that you’re so young and handling this illness. But all I can tell you is that from my experience, there are decent men out there who are willing to love you for who you are despite the struggles of living with a chronic illness.

      The most important thing is to try and stay positive and not talk about every symptom every time you feel them. Otherwise we’d be whinging all the time, wouldn’t we!!
      Best of luck dealing with everything.
      Naomi

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