When you’ve got an autoimmune disease, you’re likely to experience peaks and troughs – periods of remission and flaring, good days and bad days. Support groups are a fantastic way for people to get together and discuss their illness in spite of all of these moments, but it can be hard to get this support in the form of a mental health care plan.
When I was newly diagnosed, it felt like my mind was a washing machine on a cycle with trauma, depression, anger, frustration, devastation, and anxiety in the load. My loved ones offered me endless compassion as they had seen how unwell I had become and understood my mental state, but I was never offered counselling to adjust to my new disability.
It didn’t even seem obvious to me that I needed it – rather that I needed to focus on getting physically better. Sadly, I know that a lot of my fellow ‘vascies’ have been in the same boat. In fact, plenty of sufferers have been on waiting lists for years.
While it is undeniably liberating to receive a diagnosis, a care plan, and medication which helps to mend and keep you alive, there is a distinct lack of mental health support.
To be told your life is going to change forever is devastating – the side effects of the medication alone can be annihilating. A diagnosis can leave people feeling isolated, confused, and navigating a seismic life shift all on their own, without a space to speak about it, process it, and adjust to it. I’ve collated stories from members of the Vasculitis community to elevate their voices and to help show why mental health support is so critical with new autoimmune diagnoses.
[I have bolded any information I have added to give context to readers who may not understand medical terms.]
Kath has a very similar story to me: ‘I struggled hugely and it has taken me years to get appropriate mental health support and start undoing the damage!’
Hannah said that she ‘had a very traumatic time in ICU (intensive care unit) and was promised lots of help that never materialised.‘
Caroline opened up with her story: ‘After diagnosis, I was given a huge bag of meds, with repeat prescription and no information. I used google and scared myself. I just couldn’t accept it, I was in denial of the disease.
The medication (Prednisolone) (corticosteroids) played havoc with mind, caused severe mood swings, and made me manic depressive. I asked for help and it was put on my medical notes that I was neurotic.
No help was given. Then I had a massive heart attack, and the after care and support was amazing. Within a couple of weeks I was offered one-to-one counselling sessions with a psychologist and I poured my heart out. It helped so so much.
I even said to the psychologist that his support is needed for Vasculitis patients and he said he only works with Cardio and Oncology. He had never heard of Vasculitis, but agreed that any patient with a life changing condition should be offered counselling.’
LA added ‘I was just diagnosed in Feb this year, with no help, info, etc. I had already got a serious illness before v (vasculitis), but was on a two year waiting list for counselling – I’m still waiting‘.
David said ‘I was told we’ll try to save your eyes, but we’ve got to act quickly as the drugs are slow acting. You’re booked in for the end of next month, here’s a leaflet, have a lovely weekend and we’ll write soon. I felt like being kicked in the nuts.’
Wendy contributed, ‘Prednisolone (corticosteroids) affects my mental health very seriously, making me delusional and suicidal. I read the leaflet when I was first given it, but I didn’t realise I should contact the vasculitis team if I was affected.
I didn’t get suicidal till further down the line, by which time I was desperately unhappy with trying to keep going in the endless uncertainty. It’s hard to appreciate how much support you might need when you’re first diagnosed.
My NHS counsellor was shocked that there was no specialist support before I got to see her. The GP didn’t think I’d be eligible for local psychiatry because my problem was drug induced. He was wrong.’
L added a story which illustrates the different care on offer: ‘As a point of interest, my friend whose baby has a rare life threatening autoimmune disease was given the same support they would have been given if he’d had cancer.
They were greeted by Macmillan nurse on admission to hospital and offered all sorts of help, both practical and emotional. I guess this is in recognition of the fact that that as parents of a very ill baby they’d need a huge amount of support during such a difficult time. Shame the same thought processes aren’t applied to adults diagnosed with a similarly life-affecting illness…’
Sarah made a point with her story that was shared among others: ‘I was looked after in hospital very well but was told NOTHING about what the pred (prednisolone – corticosteroids) can do to you, either mentally or physically. So when I started having all these crazy side effects, they terrified me and, and like a lot of people, I was using google and Facebook to diagnose myself and to help myself through it.
I searched for counselling myself and found Talking Therapies which was useful up to a point, but being free, only went so far. With big life-changing diseases like cancer, there’s all this help given to you and people are so kind and respectful that maybe you have mental and emotional struggles as well. But we’re just expected to get on with it.
How are we supposed to cope with a life-changing disease when the hospitals won’t even tell us the side effects of the massive amounts of steroids we’re being put on for over a year?!?!!‘
Nicky highlighted the lack of support groups: ‘It took 2 years for diagnosis and 3 years later I have now been accepted into a group at the hospital to deal with medical anxiety/depression. I was never told it existed and have had many panic attacks’.
Shan contributed a mixed story, with a suggestion shared with the Vasculitis community: ‘my GP and me have many discussions about the effect of autoimmune disease on mental health and vice versa. Out of all the doctors and consultants I’ve seen, he seems to be the only one interested in the link as well as how different doses of steroids affect me.
Every time I see him he monitors my mood and how I’m doing. In contrast, my other consultants frequently ignore any MH (mental health) issues, which is a big struggle as I have to monitor interactions between my mental health meds and any other meds myself (usually when I’m an inpatient in hospital, lots of things increase the strength of my mental health meds and they are fairly clueless about that side of things) …
I was referred at one point to a psychologist that specifically deals with chronic illness, and he rejected the referral which has left me to figure things out myself. It would be amazing if we had something like what Macmillan offers to cancer patients, counselling and therapy after diagnosis and then on after if needed! X’
Joanne says: ‘As a partner of someone with MPA I feel that there should be help mentally to explain whats what’s happening, and coming to terms with this illness and the effects of the drugs they have to take. From my experience this last year has been so hard we are nearly ready to split up.’
Melanie contributed: ‘I have MPA. As far as the illness goes I had it pretty easy. Diagnosed with few symptoms, responded well to cyclo, (cyclophosphamide – a type of medication) in remission all within a few months. Three years later though and I’m still feeling the effects mentally.
It’s a combination of the diagnosis out of the blue, which makes me completely paranoid about any little thing; my symptoms since are dismissed as ‘just side effects’, ‘not vasc (vasculitis) related’ etc which makes me reluctant to discuss concerns with the doctors, my frustration at long term meds when I’m being told there’s nothing wrong with me.
Relationship issues when I have so many little physical and mental niggles and my husband wants me to ‘get over it’. None of that was addressed or dealt with.’
Carla wrote ‘My partner was in a coma for 37 days and now suffers with PTSD. His consultants and doctors and local GP are great but no actual help. Was promised a meeting in ICU (intensive care unit) to help the process which never happened, the GP referred to Wiltshire IAPT who said they couldn’t help with PTSD unless I paid £50 a session.
He since developed an eating disorder due to stoma issues and the surgeon just said to ‘stop doing it and be normal’ ???? I can’t fault the help around his diagnosis, but the mental side is pretty awful. And also for carers like myself and his mum, no help been given or advice.’
Sara wrote ‘I was told at my diagnosis of PAN Vasculitis (a form of Vasculitis) that I might only have 5 years to live, but with medication you should still be here in 5 years – don’t google it.
Afterwards my mum did Google it and found more up to date information through Vasculitis UK. It was clear there was no care or occupational therapy for people like me. In the end I tagged onto support for people with MS as I also had neurological symptoms, but it is difficult to engage with people about my condition because of the lack knowledge.’
Luckily, there are some better experiences. Maria writes: ‘I have a consultant and a senior registrar who have both checked on my comments about crying a lot/whether I feel low but I’m convinced the tears relate to the dose of steroids and they’ve altered the dosage to combat that, which has worked. I’m just impressed they ask/listen to me.’
Emma wrote: ‘One of the best courses I went on after my diagnosis and near death experience was going to a self management programme ran by Arthritis Care (now Versus Arthritis). It covered difficult emotions, depression, fatigue, pain and how to break the cycle and get in charge of your illness rather than let it rule your life.
It’s not just for people with arthritis, it’s open to everyone with a long term illness and it’s self referral so no need to get a health professional to refer you. I enjoyed it that much that I trained to take the courses and did so for a few years to I flared up again. This gave me the confidence I needed to get back to work part time.’
I would love to find out your experiences of autoimmune disease aftercare. Feel free to share or leave me a comment below!