How can you make the best choices when living with M.E.? Our Ambassador Rochelle Hanslow describes how becoming a parent has shaped her life with chronic illness. M.E. sufferers around the world have shared their experiences during M.E. Awareness Month, and it’s important to support each other’s journeys and decisions without judgement.
Like most people with chronic illness, I have often mourned, and continue to mourn, a life I thought I would have, and have many times wished for it back. For us “Spoonies” life can seem a constant “Well, that's not gone to plan” type of scenario, more so than most; however, I feel that even before I was diagnosed, this was the story of my life: nothing ever went right, and everything was always better in my head than how it turned out. I never thought the life I have now would be my life, and this goes beyond being chronically ill.
I'd like to give a little bit of insight firstly, before I continue. I am not the type of person who had visions of grandeur for my life or future, that's never been me. I wasn't the little girl who dreamed of how her wedding would be, what her husband would look like or be like, and I certainly never thought about having a family of my own. I was the type of girl who played with Barbies (but that was only because my Teenage Mutant Ninja Turtle figures needed dates) while wearing my Batman pyjamas. I always felt different from others and I've never been one to drop my guard very easily. I have always thought of myself as some sort of burden and with that, I keep myself at a distance and close myself off a lot. I've tried really hard in recent years to change this, but it never gets easier. Why is any of this important? Well, I wanted you, the reader, to know me a little more personally before reading the rest of my story, because all too often we judge without really knowing much about a person, and sadly, it seems these days that those who do judge you should be the very people understanding and supporting you.
I am a mother of two incredibly beautiful boys; I may be called biased, but these boys have eyes that draw you in and along with their enchantingly cheeky smiles, they just break your heart. This is something I didn't think I would ever say; as I said previously, I never thought about having a family, and when I was diagnosed I felt that the chance of me being able to successfully see through a pregnancy was just not something I could realistically do. I have miscarried before in a previous relationship, and I didn't know then that I was chronically ill. It broke my heart more than I like to admit, but it wasn't right, nothing about it was: the wrong time in my life and to the wrong person, and I have always tried to remember that, even though it hurts very much to remember what I went through. My husband always wanted a family: he and his father were very close, and he hoped that one day he could have a relationship like that with his own son or daughter. This was magnified when he lost his father in 2011, the same year he and I met each other. When I got diagnosed I was terrified that not only was my life changing in a way I never wanted it to, but also that I would lose my husband, who at the time was my fiancé. I hated the thought of him becoming my carer and knowing that the future we had started to think about may not be what I could now offer him. I have tried from day one of this constant battle with my health to not allow myself to be seen as an illness first, person second, and with this as well as with the kind of person I am, I don't show how I feel an awful lot, even on days where the pain is making me angry: I constantly battle with myself to not show it. This may get a lot of people shaking their heads and saying, “That's not healthy”, but this is my way of getting stronger and pushing through. If I opened up fully then I don't think I could be quite as strong as I am. It might not make much sense, but in the life of chronic illness, nothing makes much sense; we must simply do what is best for us as individuals and for our situations.
I talked to my husband and doctor a lot before deciding that I wanted to try and have a family. There were a lot of negatives and a lot of positives but ultimately, I felt that moving on the best I could with life and trying to adapt the course my husband and I had previously wanted to take was worth risking. It wasn't ever going to be an easy decision, but the thought of never trying would fill me with more regret in the long run than trying and it not working, or struggling if it did. The journey has been a rollercoaster. We had a what is called a phantom pregnancy at the start of our journey which was just as bad, if not worse, as miscarrying, because I genuinely felt I was going crazy; it felt like trying to convince medical professionals something was going on all over again, and there was no aftercare or support, as they don't obviously class you as ever being pregnant. It was a huge knock to my confidence and I started to wonder if I was just always going to fail; maybe I just wasn't cut out to be the person I wanted to be. In June 2015 we found out I was pregnant with our first son Macen, who is now two years old and possibly one of the most incredible human beings I have ever known. I used to be a lot more involved in several different M.E.-related groups online, and in one of them there was a young lady who wanted advice about pregnancy and M.E., so I thought I would let her know about my experience so far and wish her well for the future. Before I knew it, there was so much negative response to my post from others, who called me “an incredibly selfish and sick individual” because I was having a child. They told me that to bring up a child when you have chronic illness was sick and that I should be ashamed of myself; either that or I wasn't as ill as I was claiming to be. To be attacked like this in a community which I have always felt should be supporting each other and not judging each other left me feeling gutted and angry. Would people say I was selfish if I had a different illness, if I had different disabilities? I don't have a selfish bone in my body; one of my biggest issues with myself is that I feel incapable of thinking about myself and my own dreams, wants and needs, and find it much easier to go above and beyond for others and make sure I can help them instead of helping myself. I all too often allow myself to give more than I can manage to people who wouldn't do the same for me, so to be called selfish for my decisions broke my heart. From day one my son was my main priority: I stopped all medications except inhalers for asthma when I discovered I was pregnant, and all I took was the occasional paracetamol and any antibiotics prescribed by my doctor, who told me at the time that it would be worse for me and my unborn son not taking them than taking them. I can't and won't sit here and say it has ever been easy: there have been days during pregnancy and since he was born that I have hit a point so low that I never thought I'd get out of it. I've screamed and cried into pillows because I don't know how I'm going to get out of bed to be the mother I ultimately love being. There have been days I have felt like a complete and utter failure and wondered how I ever thought I was going to be enough for my son/sons, but they are worth every single minute of it all. The memories they have already given me in their short time here, the milestones we've achieved together, the first time my eldest son said “Love you Momma” to cheer me up when he saw I was having a low day, seeing the characters they are becoming – it is all I live for. They are my reason for waking up in the morning and fighting the pain and the part of me that tells me I can't do it, that there's no point because M.E. doesn't give up, but it forgets every day that neither do I.
I have always been incredibly grateful that I have gotten to experience carrying a child and becoming a mother, and I was incredibly thankful for having Macen, so when I found out that we were going to have our youngest son, Carson, who is now twelve weeks old, it was a whole new journey. I will admit that it took me months to come to terms with becoming a mother of two, as I was already feeling that I wasn't enough for one, and my health had been increasingly getting worse. My husband and I talked seriously about it: I was an emotional wreck for weeks, but with my past experiences, I didn't feel it was best for me to consider not having our child, and I'm so incredibly thankful that I made that decision, because I wholeheartedly would regret not having Carson in our lives. Macen has just had his developmental review to make sure he is ready to go to nursery in January, and we walked out of it being told that our two-year-old son was so advanced for his age that the Health Visitor told us she felt he was ready for school next year, not nursery. During the meeting she asked me if I had taken him to a private nursery; I explained that I hadn't, due to money, but also felt that since I was at home due to illness, it wasn't right for us. She then replied, “So this is all taught by yourself? I can tell you've spent a lot of time with him. You've done an incredible job, better than if he had already started a playgroup; you should be very proud of what you've achieved together.” Hearing those words, it took everything in me not to cry in her office: I had finally done it, I had done something right and I had done a damn good job with my son, despite my illnesses. There are times every day when my sons ask something of me as children do, and there are times I think how am I going to give them what they need, I just want to sit down and shut down for a while, but hearing those words in that meeting meant so much to me and I'm so glad I pushed through. I of course have a great support system in my own mother and my husband, which I am very grateful for, but ultimately, they are my children and my responsibility.
I wanted to share this as part of M.E. Awareness Month, not as a “If I can do it, everyone can do it” story, but in the hope that it will help those who are thinking about having children and coping with the illness, and raise awareness in those who have judged people like me who live with chronic illness but do decide to have a family. I want the M.E. community to support each other; the decisions I have made aren't for everyone and the things I have done while battling my health won't work for others, just as I wouldn't live my life the way others have chosen, but all of us have a common factor and that should be enough to overcome judgmental tendencies and just allow us to support each other. I started this by saying that we are all mourning and grieving a life we wish we still had, but is it so wrong to try and make the best of the life we have now been given, in our own ways? Our illnesses already take so much from us; let’s not take more from each other while we deal with this incredibly difficult journey.