An undiagnosed illness took the best years of my life...

[missingyears]

.... how can I come to terms with this and move on?

I developed a health problem when I was in my very early 30s. It wrecked utter havoc in my life. As in destroyed my career, relationships, hobbies, appearance, energy, physical fitness, ambitions..... and generally my sense of self.

I was told by doctors over the years that my symptoms were psychosomatic. I didn't understand how I could be so unwell and weak and it was psychosomatic! But I did my best with therapy, diets, vitamins. I just got more and more ill until I could hardly get out of bed.

So now, 14 years after I started feeling unwell, I have discovered that my symptoms were not psychological. I have had an uncommon type of infection, that I picked up most likely while travelling in an off the beaten track location (well outside of Europe), while I was young, healthy and optimistic for the future.

The infection has been VERY EASILY treated with tablets. I'm better now. I actually feel like the real me again. I'm so very happy that I do not have to live the rest of my life feeling so extremely unwell weak and hopeless. I'm so happy to have my actual body back.

I know I need to make a plan to regain my physical fitness.

But I'm finding it really really difficult to accept that'the best years of my life' were taken. My opportunity to marry, buy a house, have children etc were ruined.

I'm single. I am lucky to live in a council flat now. I lost my career, been unemployed for 6 years.... but I volunteer at an amazing charity. I'm extremely unfit with high cholesterol....but I'm trying to go swimming. My illness affected my appearance quite badly, but that's resolving now, so I'm really enjoying buying some new clothes that I actually like.

I'm just finding it all a bit difficult to come to terms with.

Gosh. What was the illness? Are there maybe any groups for people with similar?

And I totally know that I should be grateful that my condition has been curable. I am utterly grateful for that and I understand that many people receive diagnosis that are incurable and will only get worse. Please don't think I'm ungrateful.

My condition could have been treated immediately and have not affected my life. But it wasn't picked up.

@CanOfGerms I don't want to go into specifics.....because it will derail the thread. I will say it was a type of parasite, that is extremely uncommon in the uk/Europe/most of the world probably! I don't think there would be any support groups around, because it's so unusual. I think that's why I'm actually writing on an anonymous forum. Hoping to be able to express some of my feelings, without going into all the details....

That sounds awful. Can you get any counselling to help you come to terms with it?

It's sad to read that you feel you have missed out on so much. But although children may have a time limit, marrying and buying a house don't. As you feel better and rebuild your life you may find that you have more energy for dating (if you want) and for building a career so that you can fulfil some of your dreams.

How was it eventually discovered that you had it?

Have you thought about having some counselling to come to terms with how it’s affected your life?

I understand that resentment. It’s understandable. I wasn’t diagnosed till I was in my 50s with a genetic condition that has no cure and has wreaked havoc with my health, and I felt full of resentment even though there’s little in the way of treatment. Knowing you have suffered needlessly and what you had was easy to treat, must be so hard to process. Do you think counselling or just getting all your feelings out on here would help? And making a bucket list of all the things you want to do now you are starting to feel better maybe so you have a positive focus?

That sounds incredibly difficult and you have coped well with unusual circumstances.

There is an online support group called gateway women (I think that's what it's called? I'll come back and edit if not). You need help processing and coming to terms with things.

Small steps 💐

@ScooterTricks I saw a new GP who could see how genuinely unwell I was. She seemed quite concerned about my symptoms, she asked more questions about what else was happening in my life at the time the symptoms started, and was she was willing to do some more investigations. I'm really glad that happened.

For a brief period of time I felt really angry with the previous doctors who hadn't spotted the link between my symptoms and my travelling. But I'm not resentful of that now....there was a year or two between travelling and the symptoms becoming very noticeable, so I didn't even make the link myself.

@Yoghurtpotsatdawn I am sorry to hear about your prognosis and I hope you are coping okay. I think you might relate to the years of not having a diagnosis, where for me I just kept thinking that I needed to try harder to make myself feel better. And also years of telling people that I felt to tired or unwell to do things, and feeling like people didn't believe me..... and thought less of me because of my lack of effort. I hope getting a diagnosis makes things a little easier for you even if it doesn't make you better.

I absolutely love your idea of a bucket list. That sounds like exactly what I need. Thank you!

@missingyears as well as possibly counselling to help, could you consider spending some time with a life coach? To help you think about what you want now and in the future and help you get back into the path of achieving that?

Being told year after year that there’s nothing wrong, and medics and many other people thinking you’re just a bit lazy and a hypochondriac, is a horrible feeling and I can really relate to that. Even as a toddler I used to beg my Mum to let me go to bed straight after tea, as I was so exhausted and in a lot of pain. I was just seen as a tired, sickly child.

I think if your main need now is to start to take steps to live the life you wanted and make up for the many years you couldn’t live it, that’s really positive, as there is a lot you can do. I imagine you are pretty desperate to start doing that. Just having a list of achievable goals and things you want to do, no matter how small some of those things might be, will be good I think. It’s a visible reminder and focus on your healthier present and future.

It must be a weight off your shoulders to feel better.