Autoimmune conditions: the inheritance you don’t want to pass on!

I’ve just taken Small (6) and Tiny (3) for their first blood test. I hadn’t really thought about what that would mean to them, as blood tests are a ‘normal’ thing for me now!

Eek, it was really quite horrible for them – hoping we don’t have to repeat the experience. I am so very thankful for the specialist phlebotomy department for children at our local hospital. I’m sure it made a huge difference to the whole experience for them. But goodness me, my mum-guilt hit an all time high! For putting them through a blood test, but also because I’m the reason they had to do it.

The blood test was to screen for coeliac disease – to check for markers that indicate they might have the condition. Small was a bit concerned it would mean he would have to give up wheat immediately: “I don’t think gluten-free snacks taste very nice!” But it was a good opportunity to explain a bit more about the condition, and reassure him that it was unlikely he will actually have it.

Until now, we’ve taken the approach that we’ll wait for symptoms before testing the kids for anything autoimmune. We feel pretty confident we’d spot anything quickly and didn’t want to give ourselves – or them – unnecessary worry. But a doctor recently pointed out that the NICE guidelines recommend that first degree relatives get tested.

The chance they will test positive is very small, but coeliac disease can go undetected for years as sometimes people display no symptoms, or unexpected symptoms. (That was certainly the case for me – I had no dodgy tummies or gut symptoms until I actually gave up gluten). Even without gut symptoms, the damage is still being done to the villi, and that can lead to serious and nasty complications later on. Much better to get a diagnosis as soon as possible.

But getting them tested has raised this horrible, latent guilt in me that I might have passed one of my conditions on to my children. It’s not something I feel the whole time, but when I think of the possibility of one of them getting sick, it makes my stomach turn. After all, I knew I had some autoimmune funkiness going on when I chose to have children, so surely it must be my fault?

Guilt likes to pop up in many different contexts when you are living with a chronic condition or two. But one thing I know about guilt is that it is never, ever helpful or beneficial. I have learned that I have to dismiss it, or it will eat at my mind, steal my peace and begin to affect the way that I interact with people.

Sometimes getting rid of it is easier said than done! But here are some ways that I have found helpful in dealing with guilt:

  1. Talk about it. An objective perspective is always useful. Even just speaking out the guilt feeling can lift the weight – it doesn’t have to be a lengthy conversation.
  2. Do something positive. There may nothing you can do to change the situation you are in, but you can do something positive. Whether it’s making a better choice of snack (sitting here with my apple, feeling smug!), choosing to get outside instead of watching TV or sending a friend some love.
  3. Choose to be thankful. I find this really helps me to stop focusing on my own thoughts and feelings. In this particular instance, I think about Tiny and Small’s little personalities and the people they are becoming, and I realise the world would be a worse place without them (obviously, no bias here).
  4. Look at life as a whole. The reality is that every person has to deal with difficult things in their life – getting sick is just one of those things. A long-term condition can be completely overwhelming. Sometimes it helps me to remember it is just part of my life, even when it feels all-consuming. While I pray that autoimmune disease won’t be something my children have to face, it is a fact of life that they will face difficult circumstances of some sort. The only thing I will be able to do, whatever they are, is offer my love and support.

Often, these actions aren’t quick fixes; I have to keep at it as the guilty thoughts pop up again. Sometimes it can be hard to take the choice to do something about it, but in my experience, it is always worth it.

I’m so glad the blood tests are over – will certainly be praying this week that they come back all clear. And I’ll be dealing with that nagging guilt if it pops up again!

6 Comments

  1. I get why you feel that way. I have passed on one of my chronic conditions to my daughter, and my granddaughter, and there’s a good chance that my daughter has inherited another. But we can’t let ourselves feel guilty. I think we need to reframe these things in our mind – instead of feeling guilty you may have passed on your illness to them, be glad you’ve had them tested, and are able to teach them at such a young age how to cope, and manage it.

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  2. I also understand! I know that my 3 (now 22, 19 & 16) all have our genetic disease – Ehlers Danlos syndrome – but only my daughter, the youngest, has had a formal diagnosis. She started to dislocate shoulders and hips as she went into puberty and then the daily pain began….the middle one, currently away at university, suffers with chronic migraines and he is also being treated for anxiety and depression. He had a complete melt down and failed his first year, yet we had no idea…..the guilt I felt then for passing this on is still huge! I think feeling guilt is part of being a parent whatever the issues!!
    But…..I completely go along with your points and have to be glad that we do know what the problem is, how to attempt to deal with things and to talk about it. When I was growing up no one had a clue that all my odd symptoms were linked – it is over the last 10 years that I have joined the dots and had a diagnosis myself. Fingers crossed that your little ones come back with negative results, but know that they have a wonderful mum who will guide them if they are positive, Claire x

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  3. I hope your children’s tests come out all clear! Celiac disease is a tough autoimmune condition to have. I recently wrote about it on my blog, autoimmunewarrior.org, I hope you check it out!

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