Disability & Different Ability
Welcome to the last post for May to celebrate 30 years of M.E. Awareness Day. I hope you have enjoyed the blogs this month and got information you weren’t aware of. I couldn’t let this month pass without bringing a more personal touch to a post, because spreading awareness also requires truth and vulnerability.
A bit of insight
I have been, as I’ve said previously, chronically ill for ten years now. I was made aware of my illnesses around October 2012 but I wasn’t actually ‘diagnosed’ until February 2013. I met my husband, Dan, online, on a music forum in April 2011, and bonded very quickly. He was grieving the sudden loss of his father, who was also his best friend, and life seemed pretty dark for him. We both found each other at a time where we both needed a new chapter and a new light in our lives. In August 2011 we started our relationship, which was long distance at the time: I was in Scotland and he was in the West Midlands in England. I had never been a ‘well’ person but I was becoming more and more aware that something wasn’t right with me. I confided in Dan often about how I felt something wasn’t ‘right’ within me and I didn’t feel like I was a ‘normal person’. We got engaged in May 2012 and I had to make the heart-breaking decision to leave my beloved homeland and move to Kidderminster. It wasn’t long before things started to take a turn and we both realised that it was us against the masses. There was a hidden piece to all of this: my husband is Neurodivergent but wasn’t diagnosed until he was 26, after we had our first son, Macen, in 2016.
Chronic illness is very much a litmus test for relationships and I’m so proud to say that we have both stuck it out, through the most desperate, soul-destroying lows and the most wonderful, heart-warming highs.
Neurodiversity, or ND, refers to variations in the human brain and cognition, for instance in sociability, learning, attention, mood and other mental functions.
My husband has agreed to collaborate on this piece with me to bring not only a male point of view to the mix but also as someone who has had to care for their partner from the age of 23 and who also has their own battles to fight.
Dan and I are both answering these questions to give a view of sufferer and carer.
I am pleased to have my husband, Dan, here with me for this blog post. Thanks for joining me with this as I know it’s difficult for you to talk openly at times, being neurodivergent. This year marks ten years of chronic illness in our lives. What do you feel has been the biggest hurdle for you in this regard?
D: I think the biggest hurdle has been figuring out and overcoming the initial change and priority switch. Before it, we just got on with our day; we’d still look after each other and have care for each other but just get on with our separate lives, but once you were diagnosed, the way we had to plan our time and assess our day was a big adjustment.
R: For me, it has changed as the levels of my illness have changed. In the beginning it was the fact I needed to depend on you for everything and I felt hopeless and helpless. I often felt tremendous guilt about our lives being dramatically different. As I started to learn how to cope, the hurdle has been not being able to take financial stress away for us, and that has made me angry as well as feel very vulnerable and sensitive. Overall, the biggest difficulty is reminding myself that the thoughts I have are not yours; I may think ‘Oh, you’re letting the team down again’ or something similar, but I can’t take that as your opinion and become closed off or defensive.
How did it make you feel when diagnosis came around and the plans we had made had to be adapted/forgotten?
D: I personally wouldn’t say that any of them have been forgotten, they have just had to take a back seat until we could get to a point of reaching them together. Once an actual diagnosis was reached, there was a form of relief for me. It is incredibly painful that it is lifelong for you but it was good to know it wasn’t life ending, which, for me, meant we could still reach them, the timescale has just been adjusted.
R: I was devastated. We were still relatively young, both in our early/mid-twenties; however, we’d had both already experienced a lot of heartbreak in our lives and when we found each other I thought that we were finally on track. I never wanted to be the source of hurt for our relationship or future and I felt completely to blame.
How has having neurodivergence to deal with as well as chronic illness impacted things in the past ten years?
D: It does make some things difficult. In the early days there was the time where we didn’t fully understand what was going on and because of that, employers and others also didn’t understand, and it obviously made decision-making a lot more difficult. In regards to now, it is less impactful for me because in a sense, I feel your struggles can sometimes still follow a pattern. When you’re experiencing a ‘flare’ there is a certain order and pattern that I’ve noticed that allows me to fall into a rhythm and process that is familiar.
R: This works two ways. I think that had you, Dan, not been neurodivergent, you may not have dealt with it in the same mature and unfazed manner that you did. You have never tried to make me feel anything negatively and only ever tried to support me, which I also feel is a huge advantage to you understanding that I never asked for my illnesses.
The flip side is that these days, I feel it is me looking after you more in a mental and emotional sense and it can be absolutely exhausting, as serious conversations need more planning, thought and work, and planning trips isn’t just about my needs, I also have to counter in the neurodivergence, which again, depending on the situation, causes a lot of physical, mental and emotional upheaval and energy drain.
There is a certain degree of love and care that should be given to your significant other; however, caring for them is a whole new level. How has caring for your partner impacted your relationship?
D: From my side, I don’t really feel it has because I loved you and cared about you beforehand; much like I didn’t ask to have my neurodiversity, you didn’t ask to have this ‘gremlin’ either. So, in my mind, why would something that’s just as out of your control make me feel anything different towards you.
R: It has been hard as our illnesses are very different and require different approaches and levels. Dan’s neurodivergence is always there at the same level in everything we do, whereas mine varies from day to day, sometimes hour to hour. As said previously, caring for Dan isn’t physically demanding as care for me can sometimes be, it is more emotional and mentally demanding and it can make me feel depleted and alone quite a lot. I know however, just like me towards Dan, that he doesn’t want to have to deal with this and he does, in his own way, give back the same level of care, love and support for me.
What would you like to happen in regards to M.E. research in the next few years?
D: Obviously, it would be great if there was some sort of major breakthrough. I’m not saying there is going to be an overnight ‘cure’ or anything, but any discovery that could lessen the impact for the people affected would be fantastic.
R: I would love the medical and scientific worlds to merge and agree on how best to treat and support the sufferers of M.E. and provide them with less, or even better no, stigma. I would love to see more research funding for biomedical research and to have bigger leads to understanding this illness. I know everyone wants that elusive ‘cure’ but I feel that building better foundations is what is needed first.
These few questions were asked to Dan only.
Were there any times you worried that I may not make it through or that you couldn’t keep going?
Honestly, no. For the same reasons as I’ve said previously, it never crossed my mind to give up on you before diagnosis, and illness made no difference to me. When it first hit you, M.E. was one of the last things I thought it was, simply because I didn’t know better, so it was very scary and I thought then, ‘What’s going to happen to her?’. In my mind I was speculating and running all these possibilities, going to the worst-case scenario. Once I knew what we were dealing with, those thoughts lessened and I was focused on doing all I could to support you.
We have been very fortunate to have two beautiful children. During the pregnancy, did you worry more about me and the child because I was chronically ill?
No, I didn’t, because together we had been dealing with the chronic illness part for over four years at that point and we’d got pretty good at knowing the signs and reading the ground, so to speak. That meant that I thought regardless of what pregnancy brought, we’d be able to conquer it.
I know for myself, I worried that our children could face having to deal with chronic illness of their own as we’re not sure how much is genetic. Was this ever a concern for you?
I don’t think so because I don’t think that we’re the type of people that would leave them to deal with it on their own anyway. The possibilities of them having any illness are technically just as high and I wouldn’t discount having them on the off chance of any one of the other possibilities, so why for M.E. or other chronic illnesses you have?
What advice would you give to anyone who has a partner who is going through diagnosis or if their partner has just been diagnosed.
First off, if you don’t have that love and care that this situation is going to need for and from you both, it’s going to be a lot more of a struggle. There are going to be really tough days for both sides, but try to remember that when you’re feeling frustrated, tired and at your wit’s end, the person you love is feeling it tenfold. That’s not to say your feelings don’t matter, absolutely they do, but compassion and understanding is needed to turn it around.
Try to have fun together when you can, in a way that suits you both, and have a plan B just in case your original plans can’t go ahead.
There’s a lot of dedication needed from you both, but really, that goes for any relationship to make it work.
I would like to thank Dan for helping me bring our story to the M.E. community for this very special anniversary.
Thank you for taking the time to read part three of May’s celebratory posts. Please do like and share this post and comment about your experience on the M.E. Support Facebook Page. You can read previous posts anytime on the M.E. Support Blog.
June’s edition of the M.E. Support Blog will be preparing anyone in the community with children or grandchildren in their lives for the looming summer holidays and how to keep them entertained without draining your limited energy.