Diagnosis Disappointment

So you’ve been diagnosed with a chronic illness…now what?

Aug 26, 2024

I’ve been feeling very restless recently. I’ve come to realise that getting diagnosed didn’t give me what I had hoped it would...closure. No one really prepares you for that soul crushing anti-climax feeling after you’ve been diagnosed. I had spent nearly ten years of my life searching for an answer as to why I felt so crappy. I had a mission. A goal. I was going to find answers no matter what. I really thought that once I had got that answer, things would finally start to click into place. That I would get that relief knowing what was wrong, that support from Doctors would magically appear, that medication would come to the rescue, so then I could finally get on with my life. But none of that really happened. I still feel lost and empty, like I’m still searching for something. If anything, I have more questions than ever… I’m still living in that dreaded limbo land that I thought I had escaped for good.

It's been 8 months since I got my official diagnosis and I still feel just as in pain and fatigued as I did back then. I’ve spoken to my Rheumatologist probably for a grand total of ten minutes in the past 8 months, mostly due to the pressures on the NHS. I’m still awaiting hospital appointments to see if I have other autoimmune diseases, and the outcomes of those decide when I can start my biologic medications to help with my ankylosing spondylitis. But again, due to the pressures on the NHS, these are lost in the void of the waiting lists. The carrot gets dangled, an appointment gets booked, for it to then be cancelled, and the magical carrot gets whisked away again.

Even when you do get an appointment, it never lives up to what you had hoped for. You get a quick conversation, cut off mid sentence, minimal eye contact, Doctors frantically tapping away at the computer screen, a quick prod and poke at your joints with cold clammy hands, with a blood test thrown in for good measure, and then you leave feeling more confused and sore than when you went in.

But the real disappointment kicked in recently when I realised that I can’t rely on the medication to solve all my problems either. There is no guarantee that it will work, or work to the extent that I hope for. What would ‘getting my life back’ even entail now? Would I even want to go back to a career in Nursing or the NHS when it’s so easy to fall into the trap of burnout in a healthy body, let alone one fighting against autoimmune disease. Would I even want to go back to the old people pleaser Amanda who kept quiet and ignored her own wants and needs to make everyone else comfortable?

I feel like I’ve been lost ‘in the system’ again, ignored, but this time I don’t have much hope that I will ever get out of it or be truly listened to. I have an overwhelming feeling that this is as good as it gets, there is no one coming to save me. This feels very overwhelming and scary. I didn’t realise until I read

Amber Horrox

’s latest article about Grief and slowing down, that grief is exactly what I’m feeling right now. It was a very similar feeling after I lost my mum to cancer when I was 12. That feeling of being untethered from safety. A huge wave engulfing me. I literally feel heavy like gravity has been turned up on my chest. I feel I have no direction, what do I even do now? I feel like that lost little girl all over again.

I realise I have been trying to ‘fill my time’ between each appointment by distracting myself and pushing this feeling of grief away. I had a phase of eating a large amount of crisps whilst watching the Disney channel, but (not) surprisingly that didn’t magically make me feel better for long. I then did some reading, some writing, little craft projects, daily exercise, eating well, seeing friends/family, going on mini trips with my husband. Yet I still feel this odd sensation in my body. I feel restless, like no matter what I do, I can’t shake this feeling off. I'm getting tired of having to distract myself from feeling crap, it takes so much conscious effort and energy. I know some of this is the cloud of depression and hormones making everything seem so dark, but that doesn't make it any easier to cope with.

I guess I have to start facing up to the fact that this is my life now. I can’t keep pushing this feeling of grief away, I have to deal with it. I have to accept that my old life is well and truly in the past and gone. It's time to envision what Amanda 2.0 will look like.

For the first time in my life I have this big empty space in front of me. No obvious direction, no sign post signalling ‘This is the way to go’.

I’ve always been the kind of person that likes to work towards a goal. I miss having that. One that isn’t just ‘get out of bed and survive the day until you can get back into bed again’. I like to keep busy, I love to learn, I love to help people and feel useful. To have a purpose. That doesn’t just magically turn off when you’re ill and fatigued.

When you are a teenager, life’s formula for success and happiness seems so simple. Work hard at school to get good grades, go to university, find the job of your dreams, settle down, get married, have a family, live happily ever after….ahh if only things were that simple. But what if life throws you a big fat curve ball, here have some chronic illness and life altering disease. Thanks?

I miss the simple life before chronic illness took hold. That feeling like anything is possible. That feeling like you can save the world, change it in some meaningful way. I miss having that spark for life.

It’s hard to be in a body that can’t find the energy to do all the things that I want to do. Not just surviving, but actually accomplishing life goals and having ambitions.

I want more from life than illness. I want joy, and hope and magic again. But I have no idea how to get that. Literally no clue. I know it will involve writing, being of service to others and community, but not sure how that all pieces together yet.

I’m trying to see it as a chance for a fresh start. To see the big empty space out in front of me as freedom and choice. But right now it feels too overwhelming and unrealistic. I feel I need more time to grieve my past self, my past life, before I can fully move on to acceptance. I need a time to just cry and scream ‘THIS ISN’T FAIR’, and kick some bins (I used to do this when my mum died. Something about kicking a bin around really helped get the anger out! Whatever works right?). I’m in that part of the movie where you sit in your pj’s, crying, eating ice cream, you’ve hit rock bottom. But instead of crying over some guy I’ve lost, I’m crying over my lost self.

I know the next phase will be to make a plan for the future, to pick myself up again, to buy a new notebook and to write out a very detailed to-do list (just me?), but for now I’m going to allow myself to wallow in self pity.

I keep thinking of the lyrics to an Anderson Paak song ‘Celebrate’:

Time never cares, if you're there or not there
All you ever needed was a simple plan
But you're doing well, I mean, you're not dead
So let's celebrate while we still can

So that’s what I’ve been doing recently. Just trying to celebrate the tiny wins in life to keep me going, even if it’s just ‘Yey you’re not dead today’. One foot in front of the other. I tell myself, just get out of bed. Then just make yourself a cup of coffee. Then just have a shower. Something about breaking up each day into simple tasks helps (although they aren’t always simple with a chronic illness, but you get the idea).

Also the endless love and devotion from my husband helps. I was feeling miserable all day today, but as soon as he came home from work he saw that I was upset. He didn’t say anything. He just put his briefcase down, hugged me, then started to spin me around singing ‘Isn’t she lovely’ by Stevie Wonder. I instantly smiled and felt better. Isn’t it amazing what these simple acts of love can do? If you know someone who is going through a tough time right now, don’t tell them to ‘cheer up’ or shy away from their pain, just go give them a hug. Be with them in their grief. Remind them that life is still beautiful even amongst all the sadness. It will help more than you will ever know.

I guess it shows that the only way through grief is with love. As cheesy as that sounds. Isn’t it true that we can only experience grief in the first place, due to our capacity to love so deeply? So doesn’t it conclude that the only way to heal from grief is to fill your life back up with as much joy and love as possible to counteract the sadness. You need to love yourself unconditionally, and build up a community of people you love and who love you with all their heart.

But for now, I’m going back to my duvet fort and pity party. I’m sure a simple plan forward will unfold in due course….

How about you?

Have you reached the grief stage of your chronic illness journey yet? What things helped you move forward? Or do you feel stuck in it? Does it ever truly go away? Anyone want to come to one of those rage rooms with me and just smash sh*t up? Or to scream into the wind on top of a mountain shouting ‘WHY ME’, although you may have to carry me down from said mountain because I will be tired from all the screaming…

In my bones...

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