Monday, 8 August 2011

Love and Chronic Fatigue Syndrome

Relationship are difficult at the best of times. Firstly you have to find someone you like and connect with, who feels the same about you. Then you both have to want to be in a relationship. After that there are always problems, differences of opinions, various stresses along the way. When you add a chronic illness into the mix things can become a lot more complex.

For the first two years of my illness I had decided to stay away from relationships, I had so much going on and I needed to be concentrating on myself and my progress. But after those two years I met someone who made my stomach flip, gave me butterflies, someone who I would be happy to be around all the time. For this person I began to change how I felt about being in a relationship whilst having my condition. At first I wanted things to be casual, I am still not sure whether I did this because I had been alone for so long and was tentative, or whether it was to protect myself from what I had feared from the beginning; that my illness would cause problems and it would fail faster than I could imagine.

Eventually I jumped in with both feet, I knew I wanted it, but I still was so worried about the effect my illness would have on the relationship. At this point I was also attempting to stay in education and complete my AS Levels, due to this heavy work load, the need for me to take time for myself to relax, see friends and to go to all the appointments I had with doctors, psychologists, consultants etc. I was not at all sure I would have the time and space in my life for a relationship. But like all people who fall head over heels for someone, I ignored these doubts and told myself everything would be okay. For a while I was right, things were perfect (or at least they were from my point of view), for the first time in my life I knew what it meant to love someone; to want to be with that one person every second of the day, to physically feel how much you miss them when they aren't around, to want to give up everything to keep them happy and to feel like without them you have no future.

As is often the case, there was no happy ending to this story, but at the age of 18 it was unlikely I had met my soul mate, and that everything was going to work out. He ended things with me, to this day I am still unsure of why, but I can say for sure that having CFS got in the way of my relationship. I couldn't spend a lot of time just relaxing with him, I was constantly bombarded with symptoms of my illness and it is hard to know how much to tell the person you are with. You tell them too little, they feel like you are hiding it from them and you don't trust them with it, you tell them too much and they can't cope with trying to carry the weight for you. In this particular relationship, I think I kept too much to myself. I pretended to be okay, I kept the symptoms to myself and I tried not to seem too unwell.

Earlier this year I entered into another relationship. This one began much differently. I was set up by a friend and was unsure whether I wanted to put myself into such a vulnerable position again. We started talking more and more, and eventually I began to fall for him. I loved his kindness, his sense of humour, and I had complete trust in him. He was the most genuine person I had ever been with, like a breath of fresh air into my otherwise stressful and lonely life.

When we got together everything was perfect, I was confident that this was going to be special. This person was going to make a big impact on my life, whether it was going to be good or bad I was once again willing to take the risk. It was too late to go back, I was falling for him and there was no way I was going to go back to being without him. For two months I had the best time of my entire life, for the first time I felt comfortable enough with someone to let out all my feelings, all my fears, all my wishes. I shared my illness and I wasn't fearful of doing so.

Eventually things became strained, gradually the relationship deteriorated. I tried so hard to fix things, but I was fighting against a brick wall. He had given up on us, and there was nothing I could do. I also completely put this down to my illness. Maybe not so much the chronic fatigue syndrome, but definitely the depression and severe anxiety. He once told me he found it frustrating that I would just go quiet and he had no idea how I was feeling or what I was thinking. I was distant, and he didn't know how to find a way in.

I don't consider him to be a bad person at all, things happen in relationships, if it wasn't this it could have been something else. There is a reason people feel such pitty for those who suffer from chronic illnesses, leading a normal life is almost impossible (actually I am pretty sure it is completely impossible but as usual I'm sure there would be someone out there that would prove me wrong). Long term health issues affect your life, day-in, day-out. Some people do not have the capacity to deal with this, either they find it hard to empathise and feel like they are on the outside, or they find it to be too much of a weight to carry. For the person with the illness, this is hard to comprehend, you have spent so much time grieving the loss of your life as it was and adapting to the new one which has been handed to you that you can't see how someone cannot just take the time to understand. But of course it isn't this simple, some people don't want to, and others purely can't do it. It still hurts to know someone I loved didn't want me, especially if it was due to something which I had no control over whatsoever, and didn't even want.

Some people are lucky, and they find a person who they can open up to completely. Personally I think if someone with a serious condition which affects their life on a daily basis wants to have a succesful relationship they do need to open up about their illness. It may be difficult for the other person to understand why sometimes you can't do normal relationship things, like going out to dinner or to see a film. But if you are lucky and it may come down to you explaining in the right way (I find explaining facts seems to work a bit better than ranting about aches and pains and 'brain fog'), your other half may be patient, and understanding enough for them to understand that this is just the way you are now. You are no less of a person, you are just experiencing more difficulties on a daily basis than the average person. And yes sometimes you may get stressed and upset for what seems like no reason (and sometimes it really is about nothing, I've cried over not being able to find my shoes on mroe than one occasion!) and these emotions are hard to handle at times, but you still love people with the same intensity, and you can share your love with them in your own ways. Some of the times I have felt at my closest to a partner has been when I have been unwell and upset and we are just sat together embracing. Something else to appreciate is that the person you are with suffers because of your illness too, they feel your pain and frustration and if they could, they would take all your problems away in a heartbeat.

The end of this relationship occurred 3 months ago, and to this day I still carry it around with me. At first I fell into a depression, I felt that I had clearly done something wrong, and that if I didn't have this illness things would have turned out fine. I blamed myself completely and I physically yearned to have that person back in my life. After a month of being separated I was still struggling with the ending of this relationship, coping with having left eduction (I did this during the relationship as I felt strong enough with the support I was getting from the relationship to finally admit it was the right time to leave), coping with my limitations and the extremely powerful exhaustion of carrying this great weight around with me all the time. It was dragging me down, I felt drained, weak, powerless and hopeless. My whole world seemed to have crumbled around me and I didn't know how I would ever get back up after falling so far into the darkness.

Getting through this 'bad patch' has been one of the toughest things I have experienced, for a while I was too exhausted to even try, but eventually I started working on getting better. Anyone who has experienced a sudden crash with depression will know that clambering your way out of the darkness is an extremely difficult thing to do. It takes a very long time for things to seem okay again, it takes time for the dark clouds to pass in order to allow the sun to shine through, a little bit at a time. It is amazing to see how far I have come.

Recovering from this extreme low has been one of the most difficult things I have ever had to do, and I am definitely still working at it. Only recently I have discovered the importance of sharing my worries with others to lessen the burden (If you don't do this I beg you, give it a try! You could not imagine how light you feel once you share your load with another).

I still have quite bad depression, I have my low days and I rely heavily on anti-depressants and anti-anxiety medications. But I can finally see the teeny tiny little light at the end of my tunnel. I am still struggling to pick up the pieces of my self-confidence and to be able to trust all the people around me. But I am now able to look to the future, for the first time in a long time I can see a future. I am moving forward and I am excited about what life has to offer.


  1. Chronic fatigue syndrome is a condition that causes severe feelings of tiredness. Chronic fatigue syndrome has no known cause and is difficult to diagnose, its major symptoms can be treated.

    Chronic Fatigue syndrome

  2. Hoff,
    This is a short comment, but At least I can commiserate with you.
    I also have CFS, and have had relationships disappear. Being on the other side of the wall, they usually disappeared because I was not caring enough, as I was strained and having a relationship was difficult. Especially when the brain fog was at its heaviest.
    All the best

  3. Chronic fatigue symptoms are different from drowsiness. In general, drowsiness is feeling the need to sleep, while fatigue is a lack of energy and motivation.

  4. Hi Hoff,

    My girlfriend has CFS and I was hoping you could give me some advice for helping her get back on her feat as she has experienced a bad lapse recently. I love her very much and don't want to leave but as you know it is very stressful for both in the relationship. How should I go about helping her?



Any comments appreciated, don't just keep your opinions to yourself =)