How do you come to terms living with a chronic condition?

[Canyoudomeafavour]

When it controls your life so much?

I have had years of daily gut/digestive issues (upper and lower gut) with an myriad of symptoms- 25 years to be exact.

I have tried literally everything to ease, control and even cure these issues to no avail. In fact, it has become so much worse during the last 5 or 6 years.

This condition has seen me spending a small fortune on specialist diets, foods, medications, private consultant appointments, various therapies and seeing ‘alternative’ practitioners. Money I can not afford.

It has destroyed the plans I had for life.
I was training to become a dispensing optician but those plans were scrapped due to my unpredictable condition, I struggled travelling to London every day. I now work very part time hours on minimum wage.

It isn’t even a condition one can even freely discuss with anyone else. It isn’t considered polite in our society to talk about poo and bowels. Even on MN anyone talking about poop or gut habits is automatically considered to be a poo troll!

I have lost friends because I often have to cancel plans at last minute and come across flaky. I now have a very small life compared to my life before I developed this issue.

People around me just do not understand, they think it’s all in my head or that I’m exaggerating it all but honestly, I am not exaggerating anything. I feel like crap most days. I have had endless uncomfortable tests to get to the root of it all.
Who would put themselves though horrible tests and live such a small life for the sake of it, who would do that? I am desperate to live a ‘normal’ life.

I am angry that it’s taken so much from me. Angry that it affects not only mine but my dh and dc’s lives too.

I know that I am holding a lot of resentment over this and that isn’t helping the situation.
I have come to the realisation that I just have to accept that my day to day life is unpredictable due to something out of my control. I need to, somehow build a decent/worthwhile life around this.

But how do you accept a health condition which will probably be with you until the end of your days and controls those days? As desperate as you want to be free of it, realistically that may never happen so you need to live with it even though you hold so much anger and resentment towards it?

I must add that compared to many, many chronic conditions mine may seem lame in comparison and I have nothing but compassion for those living with health issues but for me, these issues truly seem something so hard to live with.

In my experience, the best thing you can do is try to make the most of the good days as much as you can, don't worry if your good days aren't perfect, accept that the bad days are just going to be awful, and if you can, find a way to earn money that doesn't depend on having to show up somewhere in person if that's something you struggle with.

That probably sounds trite and certainly during flare-ups I just rage against the entire universe that I'm stuck like this and that no matter what I do it keeps coming back. It's okay to be angry and miserable when you're having a flare-up, I don't think anyone is actually happy to have a chronic illness.

Oh and my other advice is to learn as much as you can about your condition and never stop learning about it, because advances in medicine are happening all the time and so are changes to treatment advice and a new piece of information could transform how you live with it. For example, when I was first diagnosed with one of my conditions, I was told I had to be on lifelong toxic medication that would take 20 years off my life (on average). Now the accepted wisdom is that most people with that condition only need medication during an episode.

Oh and screw those people who don't get it. IMO, close relatives are the absolute worst, most invalidating, least supportive people when it comes to chronic illness. I just don't talk about illnesses to them if at all possible (even if that means leaving something unanswered for weeks) because it's better than knowing they don't believe me. It's put a massive distance between us.

It's shit though. Chronic conditions are all different and just because one person with a worse-sounding illness can do something doesn't mean we all can.

I just don't talk about illnesses to them if at all possible
Or food. I literally dread eating at other people's houses with the long parade of "can you eat this?" "can you eat that?" "I checked the ingredients on this, you can eat it!" And people not understanding that just because I can eat something doesn't mean I want to right now (or even like that food).

So sorry to hear you're going through this. I too have a chronic illness (mine is neurological) and it's taken me years to settle my anger and frustration at it all. I've had it for 11 years now. My symptoms include numbness in my arms legs and face, impaired mobility, fatigue, amongst other things!

I think it's quite normal to feel angry, or sad and to an extent it's like the cycle of grief as we grieve what we have lost. I became very depressed to begin with but with therapy and medication I'm a lot better now.

You need to find new purpose and that takes time. I now volunteer as an administrator for a small local charity (they are ok if I miss a day because I'm finding things tough and I can easily wfh if I need to. I'm also retraining (was a teacher, couldn't carry on with that) as a counsellor, a nice sitting down job!

I'm not sure any of this is helpful, but there can be light at the end of the tunnel. I've also been able to be there for my children, always home when they got in from school. They always knew where to find me!

Take care of yourself, and let others take care of you too! The people around you love you and want to help, so let them!