Helping DD come to terms with multiple chronic illnesses

[Jon1970]

Hi, I am looking for ideas and approaches to help my daughter come to terms with multiple chronic illnesses. Just after starting university she started having seizures and was diagnosed with epilepsy, this is only manageable with medication. 2 years later she was very ill, and to cut a very long story short, was diagnosed with Undifferentiated Connective Tissue Disease, which is similar in many respects to Lupus. This requires multiple medications. A year later she was diagnosed with Haemophilia and then last year with PCOS. She abandoned the idea of doing Medicine, and has now swapped to doing a postgraduate course instead. She is worn out, tired of the grind just to keep going and is racked with anxiety for the future, which looks wholly different to her now than how she viewed it five years ago. She is worried that she will be on her own, worried if her health will get worse again and not be able to work, and summed it up to me tonight by saying "dad, I just can't see the point, why struggle like this for the next 60 years? For what?".

I've tried at every turn to explain to her that she is catastrophising, but I can't shake off the fact that her concerns are understandable and rational. There's nothing I can say to make everything better, I can't make it all go away. I wish I could take on all her illnesses for her, but obviously I can't.

Does anyone have any advice for coming to terms with chronic illness at a young age, just at the point where you are meant to be having the "time of your life"?

I am/ have been in a similar position to your daughter. Not the same illnesses, but generally similar.
Things that helped me:

• Using all the mobility and other aids that I need to manage pain and fatigue (this depends on the illness, in my case an electric wheelchair, a walker, a shower chair, and having someone else do my laundry and cleaning).
• Going part time at uni
• Therapy, honestly. Not CBT where they tell you to your fears are irrational, because they're not, but proper talk therapy where you can process the medical trauma and the shittiness of getting so ill at a young age
• Having people acknowledge that it's rubbish. In a way, she's not catastrophising, she's right, it's shit. And the thought of 60 more years like this is hard. And actually having someone agree with that in a compassionate way was really helpful to me. Not in a "yes fine it's shit you may as well give up now" sarcastic sort of way (not saying you're doing that!) but in a "this is hard, and I will be there alongside you" kind of way
• Making friends with other people with the same illness - look for support groups, charities that run online groups etc. Helped me feel less alone. Part of being ill as a young person is how isolating it is, I lost a lot of friends and just looking at my classmates made me feel lonely as they had such a different experience of uni life to me
• Letting go of the "time of your life" idea (again, therapy), but at the same time making time in my life for things that bring me joy, adapting my hobbies to work for me
• Personally to me, my faith helps me (God is with me, but also someone who can take my darkest moments), but appreciate that's not for everyone/ might not be necessarily helpful if your daughter doesn't have a faith

The worries about getting worse, not being able to work, and not being able to find a partner are really hard. In my case it's encouraged me to go for what I can do asap, in case I lose the abilities later. In terms of dating - it might be encouraging to follow some people on instagram with chronic illnesses, as some of them have partners and talk about the realities of an interabled relationship. It also helped me to just accept that this stage of my life (not "settled down") is likely to last longer, and to think of non-disabled friends and family members who've had the same but ended up fine.

Meant to say as well, your presence as a loving dad as well will help, even if you don't feel like you can do anything. I remember crying on my dad once about how lost I felt, and he couldn't solve it, but just being held and loved helped immensely.

No advice but unfortunately following this. My DD is 19 and having to come to terms with chronic pain - it is awful seeing her friends having the time of their lives when she is going through the worst period of her life so far. She has started to worry how she’s going to live the rest of her life like this and to be honest I am scared for her. She used to be the life of the party with aspirations of medicine like your DD, she’s a shell of her former self and it’s just so heartbreaking to see. It feels like one step forward two steps back at the minute and she’s struggling to see the light

@CrocusSnowdrop's comments are very good.

You do have to allow yourself to grieve the loss of your previous capabilities and the life you thought you were going to have. Grief is unfamiliar territory to most young people: it's bewildering; it doesn't fit inside the shiny life paradigms that your daughters are too young have discarded yet; it feels othering. Professional support can be helpful with this.

Unlike PP, I found CBT useful. Mine was part of the post-diagnosis Occupational Therapy intervention. Once I'd got over my disappointment (it looked a lot like rage, actually) that the counsellor wasn't trying to help me get better, I realised that my reaction was proof I needed what she was offering - pathways to acceptance and adjustment.

It feels important to stress that we are THE SAME PEOPLE WE WERE. Our bodies are not the same bodies we were used to ... we are our bodies, with their various limitations, and, like everyone else, we're also more than that. Moreover, we continue to grow - particularly your girls, young as they are. So many avenues are still open to them!

Thinking along these lines has helped me identify and develop some of my talents, which I may have neglected while I was so busy doing 'fit & healthy' stuff. Now I can see, and shape, an interesting future for myself. I'm still sad that it's not the future I thought I had - and it does feel unfair that some of us have to face these massive challenges, evolve this awareness, while others bumble along obliviously. It's something to be proud of, I think.

Have you seen these blogs on Young Minds?

.

Thank you for your reply and for taking the time to do that, it's interesting what you said about CBT, this just made my daughter a mixture of angry and even more depressed. What is the point of saying "let's find a way to reframe those thoughts...", when you can hardly move half of your fingers. It's a fact, they hardly move and are really painful and you're 22 not 82. And the therapist is trying to suggest you look at it differently and find a positive out of the situation when as you rightly say, it's basically just s**t.

Thanks for your honesty. I'll find a way to share this with my daughter. I sincerely wish you all the best.

Your poor daughter. I have multiple chronic illnesses. To be honest I don’t think there ever is a lightbulb moment where you feel you’ve ’come to terms’ with it. I have a day every few weeks or so where I feel very pissed off with it all and a bit ‘why me’. I get my feelings out then I’m okay, or at least I manage, for a while and they fade to the background mentally while I concentrate on other things.

After I was diagnosed I was really angry for a while in part because life had already been quite rough and I didn’t feel I deserved it. Everyone around me was full of ‘positivity’ and seemed to get quite annoyed when I moved a bit or didn’t want to say ‘Yeah I’m coping amazingly! Nothing I can’t deal with, me! I’m putting 2 fingers up to my diagnosis!’.

I remember a nurse involved in my care was the first person to say ‘How shit. I would be really upset if I was you’. I actually wanted to hug her - the first person to just say ‘yes this is crap’ rather than the Insta positivity shite. It felt good to be seen and not to be expected to put a brave fact on to please everyone around me.

Let her vent, let her be angry or pissed off, this doesn’t mean she isn’t coping, it means she’s working through it.

I hope she starts to work through it soon 🌷