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Just One of Many: Difficult decisions with Invisible Illness

09 Sep 14
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This year’s theme for Invisible Illness Awareness Week is “Just One”.

Invisible Illness Awareness Week 2014

My whole life I have suffered from invisible illnesses. From a very early age I suffered from asthma and allergies. Because I grew up with them I know how to manage them reasonably well (although I’m still identifying and learning to manage new allergies all the time). The newer conditions (Fibromyalgia, ME/CFS and Pelvic Congestion Syndrome) I’m still learning how to manage and live with.

I feel like since I have been living with these conditions my whole life has been turned upside down. Many things have been put on hold or given up. I haven’t worked in over a year, I struggle with social events and I only just manage to stay positive with the limited level of activity I’m capable of.

Lately, I’ve been struggling more than usual with staying positive. I honestly don’t mind that my ability to do many of the things I love has been limited. I don’t really mind too much that I haven’t been able to work for so long and that I haven’t been able to go on the holidays I dream of.

There is JUST ONE thing that I really struggle with and I think it is something many women in my position are likely to be struggling with as well.

Many of my family and friends are either pregnant or have young children in their families. Although I am extremely happy and excited for them, it also makes me sad. Before the new conditions hit, I had believed that by now I would be a mother, or at least we would be trying for children.

Now my life is filled with so much uncertainty. Although I’m told that my conditions do not affect my fertility, many of the drugs I’m on at the moment can OR can affect the development of a baby. I’m not sure my body can cope with pregnancy or with looking after a young child. My bone density is low which means I have a higher risk of stress fractures and very weak bones. My pain is going to increase during pregnancy due to the pelvic congestion and all my other conditions have a 33.33% chance of getting worse as well based on what information I’ve been able to find.

Despite all of these issues, having a family of my own is the number one most important thing to me. Ever since I was a child (possibly even as young as 4 when my sister was born) I have wanted to be a mum.

If I had to choose JUST ONE activity I would like to achieve in my life it would be to have a child of my own.

I have a difficult decision to make and I feel we need to make it soon. To try for a biological child of our own or to adopt. There are treatment options available for some of my issues which I have been told we can’t consider until we’ve finished trying for children.

Whichever choice we make, I know that any child we bring into our family will be loved and cared for. I may not have the energy or strength to be a ‘normal’ active parent, but I will be the best mother I can be. We have a wide network of family and friends who I know would do whatever they could to help us as well.

What is your JUST ONE story?

Are there others out there who are struggling with decisions related to starting a family with multiple chronic illnesses?

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  1. Claire September 9, 2014 at 8:03 pm

    This is such a hard question. I’m not at that stage just yet, but in a few years I’ll be looking at those same choices. Falling pregnant and carrying to term is the least of my worries – I can barely deal with my needs – keep myself clean and fed. How could I take care of a baby??
    I guess this is JUST ONE more way that CFS is taking away all that I am.

  2. Jenn M September 10, 2014 at 1:38 am

    I understand where you’re coming from with the difficult decisions or questions. For me, it’s not about starting a family, but there are other concerns which have me metaphorically biting my nails: will I ever be able to live on my own? How will my transportation needs be met? How am I going to meet other people since I live in such an isolated, rural area? Will I ever be in a successful relationship (I would like to get married in time)?

    With my “maternal instincts”, I want to be an aunt so bad. However, my sister’s not going to be having children until probably her 30’s (she’s 29), and I have no other siblings. So yeah–when I see other people with children, I get envious too.

    Sending love and positive vibes your way. Stay strong! xx

  3. ChronicMom September 10, 2014 at 8:50 am

    I really related to this even though I was able to have 2 kids before I developed illnesses. I’m lucky had kids before, but I always imagined I’ve have one more and now that is impossible. The choices we have to make because of illness are so heartbreaking it is really hard to stay positive sometimes.

  4. margie September 11, 2014 at 8:10 am

    thank you for sharing that megan-sure the right decision will come soon for you and sure it will be the one that is best for you-god bless you ,you are such a special person!

  5. Haydee April 16, 2015 at 6:36 pm

    You can only try your best. Taking care of a child is exhausting and difficult under chronic pains. My two daughters are grown but I can so relate to your blog. Adoption might be the way to go. Pray on it and wait for your answer. As a young grandmother of a three year old, it gets difficult to take care of a child. I had to be honest, it not fair to both of you. If you are bless to have someone help you. Go for iit . Many blessings to you. Think about your health and all that you would go through. As is, I have very little energy for myself. Hugs

    • Megan S April 16, 2015 at 8:59 pm

      Thanks for your honest feedback Haydee. We’re definitely making sure we cover all bases before we make a decision.

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