Anyone else living with a chronic (physical) illness too?

[batpig]

Hi everyone!
Just wanted to see if anyone out there is potentially going through a similar thing. I was the happiest girl in the world all throughout high-school and my early teenage years, then when I was 16 I got diagnosed with 2 chronic illnesses - systemic lupus and another lesser known illness that I'm not really comfortable sharing with the world.

Both of these conditions are lifelong and the best case scenario is that they get kept 'under control' with constant medication which hasn't worked in the nearly 4 years since my diagnosis. I feel like I've tried every medication and every natural therapy and yet, both conditions being progressive in nature, have only gotten worse over time.

I am absolutely terrified of the thought of them continuously getting worse as I grow older and never going away as they have already taken such a severe toll on my life in such a short time. I have become extremely depressed in these last few years. They have stopped me from doing everything I enjoy, made me drop out of high school in Year 12, I was unable to do any further study, I had to quit my job, I have zero self-confidence, I can't go out anywhere, I can't go out in the sun, I can't afford anything but food and petrol etc etc.

It has left me in such a horrible headspace that I can't even find the energy to go out and try any new medications because it's just such a big task that has already failed so many times and I get so overwhelmed every time I think about having to continue living like this for another 60ish years. I also am so stressed about all of this that I hardly ever sleep more than a few hours.

Going out of the house is really difficult - pretty much the only time I go out is to go grocery shopping - so I have a non existent social life. I have no support from my family either so it's getting pretty lonely keeping all of this inside my head too.

Sorry for the long post - any advice/similar stories/anything appreciated. Thanks for letting me get it out!!

[Quercus]

Hello Batpig and welcome to the forums.

I'm glad that you spoke up and joined us here because I can relate. I have autoimmune arthitis which was triggered by my pregnancy. So like you I went from feeling young and happy to not being able to move.

Living in constant pain. Going through the system of hoops you jump through to find medication to give you some sembalance of a life back. The constant gnawing fear. This is my life now. I'm 32. What will 60 look like??

My point is this FEAR is magnified by depression and anxiety. Have you done the k10 checklist on the BB website? It really wouldn't surprise me with all the changes and restrictions you face if depression and or anxiety have crept back in. They did for me.

The hopelessness and fear is still there for me. But it is significantly less now that I see a psychiatrist and have medication (my cupboard and fridge are like a chemist too if you are wondering 😊).

I think it is time to see your doctor. Book a long appointment and tell them to ignore your diseases and focus on your mental health. I was told for years I was fine and that anyone would feel low living in chronic pain with toddlers. Do not let them fob you off. If they try find another doctor. Keep trying. The hand you've been dealt is hard enough to manage without leaving a mental illness to build unchecked.

I don't want to overwhelm you so I'll leave your support network (or need for) for now if that's ok. I would really like to hear more of your story if you wish to return. It helps me in return to not feel so alone because a lot of what you write I feel because I've lived it too.

Nat

[Croix]

Dear Batpig~

Finding one has a permanent illness is a terrible thing and once the matter settles down there is the realization of how hard it makes life. The restrictions are very real, and the prospect of things either staying the same, or even getting worse, make all of life seem grey and hard, perhaps even pointless.

True other people have things wrong, some even worse, however there is no point in talking about them, it does not help in the slightest. With one exception, I found I needed to know why they keep going and how they cope. (I've a degenerative spinal condition which has a number of consequences, this after many years of PTSD, anxiety and bouts of depression).

I found it is how one feels about oneself that works. I don't hold my self up as having the answer, I don't. However neither my mental health nor my spine entirely rule my life, and I do want to keep going. You mentioned zero self-confidence, feeling it's not worth trying new meds, losing your job, stopping your education and being restricted pretty much to your house. All of that, plus feeling overwhelmed and exhausted would make anyone feel terrible even without the illness on top.

I get by in a couple of ways. First and most obvious I have treatment from a psychiatrist and that basically stops depression taking over and reduces anxiety. As well I try to keep busy. I volunteer a lot, in two totally different areas, one dealing with people, and the other with technology. Neither require much movement and give me occupation, accomplishment and interests that take me outside myself.

I do differ from you in having family support in the form of my partner. A person who I not only love but owe a lot. I'm sorry your family do not support you. Is there any sort of reason they are that way?

As for your social life, perhaps when you are feeling more positive you might find friendship or more. Incidentally I noticed your avatar has a dog in it, is this a pet?

I tried in the above not to seem too over-the-top with an unrealistic view, you don't need that, but at the same time to try to get across the idea that there is life after disaster and it can be enjoyable and worth living, despite very real difficulties.

Feel free to come back and say I'm wrong 🙂

Croix

[batpig]

Thanks so much for sharing, it really helps.

I was visiting headspace in Melbourne for a while, a free counselling service for young people, but even that ended up being pretty difficult. I went to my local GP for the 10x free mental health care pan, told him what was going on, and he said that as I'm a 'young girl' it's normal for me to be feeling this way and that it's probably just because the 'conditions affect my appearance, and girls are concerned with their appearance.' That couldn't have been further from the truth but I'm honestly not great at speaking up and so I just left, very upset. I haven't been back to a GP since because I'm really not great at articulating whats going on in my head to doctors -I feel like there's so much going on that I get overwhelmed and my brain just stops.

I do have a wonderful boyfriend who is starting to grasp how I'm feeling, I just feel guilty about throwing this all onto him? I'm very used to dealing with things on my own but I know I'm not going to be able to do that this time.

Thanks so much for your reply I really appreciate it 🙂

[batpig]

That was so lovely to read, thank you so much.

I try to keep busy too and I have many bits and pieces to distract me for when I have to stay at home and have nothing to do. I always seem to feel slightly better in the mornings and afternoon when I'm busy and then in the evenings it goes sour when I'm alone with my thoughts. I try to volunteer as much as I can also.

I don't have family support - my mother isn't in my life at all and my dad thinks very poorly of mental illness. I do have a wonderful boyfriend of 2 and a bit years who is trying his best but sometimes, understandably, just doesn't 'get' it. I've become so withdrawn from friends that I had in the past that my boyfriend is really the only person I can talk to about it and I don't want to burden him with all my thoughts 24/7. Good thing this forum exists!

And yes my avatar is my gorgeous old dog!

All of your message was very relevant and made perfect sense and I'm very thankful that you took the time to write it out 🙂

[Scruffy1]

i have a rare medical condition that only affects 1 in 100,000 people worldwide. It’s not life threatening and there is no cure for it but there are treatments to relieve symptoms. I have had surgery. Before that I lived on a cocktail of medications. I have had it for more than 20 years

[Croix]

Dear Batpig~

I'm very glad you have your boyfriend there for you, even if he does not totally 'get it'. I found with my partner it makes a world of difference, she had no MH experience and learned by trial and error, motivated by care.

When one is ill or has had to deal with disaster the urge to talk about it is very great and any thinking person will worry that they are overloading the recipient, partly be the sheer amount of unhappy talk, partly perhaps by leaving them frustrated at being unable to fix things, and partly though making them worry more as they realize the depth of the pain or how different from their lives it all is.

I guess everyone has to find some sort of balance. When I was so bad I hardly knew what was happening my partner bore the brunt of it all, from venting to anger. As I improved I really tried to do what I could to show my appreciation - and later again my love. From making a cuppa, to doing washing to telling a joke. All sorts of things. When I could I listened to her hassles.

I found she was stronger than I anticipated and was someone to lean on. I think many people fortified by love are stronger than anyone thinks. Wanting to help one's loved ones is built into most people and doing so breeds satisfaction and a sense of self-worth. Years later the tables were turned I was able to be the strength my partner needed, and then I came to really understand why she had stuck by me.

She did have her mum to support her throughout - does your boyfriend have a parent or sibling to help support him if he feels a bit overwhelmed?

As you say talking here will relieve part of that urge to cry out and also discuss, however talking to your boyfriend is gold.

Tailoring your life to accommodate physical limitations does work even if taxing and at times discouraging. Satisfaction, interest and accomplished are still there.

Croix