MCTD: The Guilt Factor

July 25, 2010

This is a post I have mulled over for a few weeks. It’s been in the back of my mind but I know that people won’t understand where I am coming from, however I hope they try. My mixed connective tissue disease has come with a strong dose of guilt.

The guilt has come on more strongly since starting this blog and putting it out to the world that I have this illness. Letting everyone know that I have been in pain and had hard times. Because all of a sudden, people are aware and are very sympathetic. I receive comments on the blog, messages on Facebook and Twitter, texts and calls and when I run into friends on the street there is a more serious and caring undertone to their ‘how are you?’ greeting.

The problem is. Some days I feel good.

If a work mate offers to carry something for me or a friend makes allowances for me because I might be hurting, I feel touched but I also feel bad because on that day, I might only have a dull throbbing in my hands or I might have even forgotten I’m sick.

The worst (although I don’t necessarily want it to stop 😉 ) is when friends tell me I’m brave or strong or they are proud of me. I don’t feel worthy. I think I’m doing what anyone would do when faced with a serious illness. You get on with it.

I remember when a friend who was 26 at the time beat breast cancer. When I saw her I told her how impressed I was with how she was coping and she said ‘it wasn’t actually that hard.’ At the time I was flabbergasted that she would undervalue what she’d been through and how well she’d handled it. Now, although I would never compare my illness to cancer, I understand what she meant.

The craziest thoughts I have and I know this is stupid but I said this blog would be honest, when I wake up and I’m in pain, sometimes I think ‘phew, I’m not lying.’  Of course I don’t want the pain but when I have it, I guess, the guilt stops. And the pain takes over.

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4 Responses to “MCTD: The Guilt Factor”

  1. Judy said

    I think you should allow yourself the freedom not to feel guilt over the people in your life wanting to help you. You have a chronic illness, for which there is currently no cure. I have had to learn to accept help – even on days when I feel great…as I now know that if I “overdue it”, I will be in pain the next day – or days. You are blessed to have wonderful co-workers and friends, who have made a decision to learn about your illness by reading your blog – I think that is terrific! Accept their help with a smile – not with guilt. I believe those who make an effort to ask how we are feeling each day, are sincerely wanting to know about our health. If you are having a good day, celebrate that moment! One good day doesn’t mean you are cured. And, you are very brave to write this blog – it’s educational and it’s excellent!

    • Hi Judy,
      Thankyou for your lovely and positive message. It makes alot of sense….and as if to remind me I have nothing to feel guilty about I’m having a flare up at the moment haha. I’m glad you have enjoyed the blog. Please feel free to contribute whenever you have something to share. Do you have MCTD too?
      Thanks again,
      Naomi

  2. Lisa said

    I totally get what you are saying here although for me it doesn’t feel like guilt just confusion. On one hand you want people to understand the struggle you go through on a day to day basis but on the other hand you don’t want the pity. It’s like hey just acknowledge it when it’s necessary and accept me for who I am and we are all good. I don’t need someone to ask if I am sure if I can go on a hike, or offer to cut my meat for me, but I want understanding when I need someone to open a water bottle or when I just don’t feel good and don’t want to go out for them to know why without making a big deal of it. Sometimes it feels like people are treating me a broken and other times as if I am some courageous hero. Realistically I am just a 25 year old who has dealt with this disease for 18.5 years and is still trying to figure out how to make it work. That is confusing.

    • Hi Lisa,

      You’ve hit it on the head. That is exactly how I feel. Your post did hit me a bit though because you’ve had it for most of your life and I think I just realised that this is it, for life. I just think I must think it will go after a while or something. How are you on a day to day basis? What country are you from?

      Naomi

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