In this post we hear from two people, Taylor* and J.E. Barnard, who have searched for support from therapists as they faced chronic ill health and the consequent impact on their daily lives. They talk about the challenges they’ve faced, and the blocks they experienced as they searched for support.
The issues are varied and cover:
- a lack of understanding of medical symptoms and their impact on daily life
- cancellation policies that make accessing therapy especially difficult for those with a long term and fluctuating health condition
- a deeper failure to allow patients to express their deepest feelings (grief, fear for the future, and more) and instead offering distraction via ‘positive’ suggestions
- impact on relationships when a failure to understand chronic illness affects couples or family therapy
Issues of grief, vulnerability and loneliness are really hard to talk and write about. Wholehearted thanks to the people below for sharing their experiences so honestly and openly.
Taylor* on experiences with individual and couples’ therapists, and long term ill health
I have had several bad experiences with therapists.
I have MCAS and one of my triggers is exposure to toxic mold from water damaged buildings. The therapist couldn’t understand that MCAS is different from anxiety and insisted that my need was to feel safe. She could not understand that I also need to BE safe and that feeling safe and being safe are not the same. It is possible to feel safe but not be safe and vice versa, and she refused to acknowledge this possibility. It’s not safe for me to spend time in water damaged buildings containing toxic mold, which triggers my MCAS – I have very physical problems from this – and she insisted that the only relevant consideration was whether or not I felt like I was safe. Essentially, she psychologized my MCAS as anxiety.
I saw a couples therapist that had a strict attendance policy – clients must attend every week at the designated time, with only a couple of cancellations and rescheduling (within the same week) allowed per year. Otherwise clients are dropped. I had a “mild” acute covid infection, couldn’t eat a meal for a month, dropped 15% of my body weight, went to the ER (Emergency Room – or Accident and Emergency in the UK) twice, had a severe cough, and spent weeks in bed. During that time, I still had to see the couples therapist (or be dropped as a client) because we had already used up our cancellation/rescheduling allowance. This is not OK. I think that the stress from having to see the couples therapist while acutely sick for over a month contributed to my developing Long Covid.
I am now seeing a therapist who has lived experience with Lyme and the difference is like night and day. I am, however, after much searching, still looking for a list of couples therapists who are truly informed about MECFS, Lyme, POTS, MCAS, Long Covid, etc. There don’t seem to be very many and there is a huge need because Long Covid in one or more family members can put a huge strain on relationships.
It’s really hard to find appropriate providers that will not harm and might even help.
*name changed to maintain privacy of the interviewee
J.E. Barnard on the frustrations of ‘positive’ encouragement when dealing with grief
I’ve had therapy sessions with a few counsellors over the past 34 years of living with a severe chronic illness that has left me housebound a lot, sometimes bedbound for months-to-years, and taught myself to walk and drive again 12 years ago after a particularly grim patch. (I had to give up driving again when it became too much for me last year.)
None of my therapists were prepared for the depth and breadth of grieving that such chronic illness brings along. Early on we must give up so many dreams of where we thought our lives were going – careerwise, or family, or travel, or sports/hobbies that are no longer possible – and that’s hard enough.
But every year after that, there’s more loss of function that will probably be irrecoverable. Every season brings another round of watching in helpless envy while others of our family, friends, neighbours, go off doing things that we no longer can.
And every therapist I’ve had, no matter how familiar they thought they were with the limitations of my illness, rather than letting me talk out my grief, anger, frustration, hopelessness about this new loss, would inevitably stop me partway through my explication with suggestions for ways I could amend the situation. Ways that were, also inevitably, far beyond my ability to do, or do consistently.
They thought they were helping me ‘not wallow’ in the negative. But they were actively hindering my attempts to process those feelings within my limited psycho-emotional energy. Which also had to be balanced with all the demands on that energy from the current daily situations that also had to be processed and addressed.
I am tired of having to re-explain to therapists that I simply can’t expend the energy for whatever works for their not-ill/less ill patients. Support my grieving.
J.E. Barnard is a writer and editor who has been ill for 34 years.
Thanks to Kristina Tripkovic on Unsplash for the photo at the top of this page.
