Sometimes I’m fine, often I’m not - part 2
This is part two of my blog about life with dynamic conditions and disabilities.
I have chosen to share a little more of my own experience here - this isn’t representative of everyone experiencing dynamic conditions, more of a perspective from both chairs in the therapy room over the last few years.
Chronic illness crept up on me in my late twenties. Just at the time when I was forging ahead in my then career, going out as much as I could and thinking about my future…I had never contemplated “being ill” so having a GP draw my attention to the impact of a condition I’d always batted away was a turning point. I couldn’t really fathom what it meant except I was now different and the future felt less certain.
There was something deeply healing about being asked to contribute to the article for Refinery 29, with a diagnosis in the rear view mirror. Catriona asked me to answer four questions for the article, which are below. These views are my own, based on personal and professional experiences. They are not medical advice but I hope some chime with you, if you are feeling isolated and worried or keen to explore “what next” after a diagnosis.
If you have been recently diagnosed with a dynamic disability, please speak with your medical team and consider working with a counsellor who has a specialism/interest in this area if you would like to explore this further in a safe and supportive space.
Why are nuanced terms such as dynamic disability important for society and disabled people?
Visibility and community really matters, especially when thinking about the mental health impacts of managing dynamic disabilities. It can feel isolating and lonely to be young and experiencing dynamic disabilities, especially when we don’t see ourselves represented. I still get a rush of excitement when I see someone younger using a mobility aid and matching it to their outfit on Instagram – we need to see more of this, and talk about the good days and bad days, as well as the styling. There also needs to be space for the difficult emotions that so often come with these labels – the frustrations, the anger, the fears about the future.
It’s also common for people with dynamic conditions to struggle with imposter syndrome because some days may feel better than others – you may end up doubting or minimizing your pain or symptoms. This can be reinforced by messages from others such as “you look fine” or “you were ok yesterday”.
Naming these conditions as dynamic disabilities is so powerful - these terms help us to know there are words for what we’re experiencing. Nuanced terms can help us become more accepting and confident in contacting with this element of identity in a positive and proactive way. It gives permission to sit with feelings that may have been avoided or repressed - many of the amazing people I work with talk about feeling grief and loss in relation to what they feel is impacted by their conditions, as well as anger and frustration at not being taken seriously or working with medical staff who may not show empathy.
Nuance also helps to challenge stereotypes – as a society we’re still stuck in loops that say “young = healthy” or that you can’t be unwell and productive or in pain and spontaneous. Without representation there is also less advocacy for essential services and treatment, which can bring added stress.
There can be real power in your self talk - how do you relate to yourself and this aspect of yourself?
How would it feel to try on the term “dynamic disability”? Are there other words and terms which feel more comfortable for you?
Notice if any automatic thoughts about your worth come up - are they true? Are they accurate?
Compassion focused approaches can be really helpful in exploring how you feel about your conditions. I recommend Paul Gilbert’s “The Compassionate Mind” as a starting place if you are curious about the power of compassion.
What may people with dynamic disabilities find so difficult about navigating work with fluctuating symptoms?
The world of work is changing but there is still a long way to go. Generally, I believe that we are getting more confident about asking the right questions at interviews and finding organisations which are a good cultural fit.
However, there may be challenges with finding work that will fit with fluctuations in symptoms – you may feel that you would prefer to work part time for instance and there can be challenges in finding work that is both rewarding and pays well enough. Finding a mentor or therapist to support you as you explore making changes, freelancing or a portfolio approach may be helpful.
Full time work and some industries may bring concerns about the challenge of what "productive” looks like and I have worked with clients experiencing burnout as a result of fears about being open about their symptoms and challenges in unsupportive workplaces. Changing managers, companies, or roles can bring about concerns about how open to be about how your disability impacts you, particularly as some conditions may not reach thresholds to be covered by the Equality Act.
As a result, it is not uncommon for some people with dynamic disabilities to come to counselling for anxiety or feelings of shame – when we unpack these, it is often down to unsupportive workplaces or unhelpful management styles. The right support can help you to develop and maintain a positive sense of self and the confidence to discuss boundaries and accommodations, if this is something that would help.
What fears and hopes do you have about work?
Do you know about your rights at work and feel comfortable advocating for them?
If you would like to explore advocating for your needs and getting the support you deserve, a therapist or coach can support you in communicating assertively and/or developing the confidence to find work that works for you.
What advice would you give to people with dynamic conditions around dating and relationships
Dating can be a minefield at the best of times as you try to work out if this is going somewhere or worth pursuing. Give yourself permission to plan ahead…being spontaneous and planning are not mutually exclusive, I promise! You may need to consider energy accounting more than others – that is, planning proactively to make sure you have enough energy to enjoy yourself. There can also be added anxiety about when to reveal your condition(s) to the person you’re planning on dating and how this information will be received.
Fluctuating conditions bring an added dynamic to established relationships, particularly if you are dealing with ongoing pain or low mood as a result of managing life. You may need to explore what accommodations will be helpful within your relationship. For instance, if you have more energy in the mornings, this might be a good time to be intimate, if you want to.
It’s not uncommon for people to fear that their partner will become tired of dealing with the disability and leave, which can lead to low mood and low self-esteem. It’s important to understand that you don’t have to tolerate these difficult feelings on your own and that everyone has needs in a relationship and that it’s ok to discuss yours with partners. Support groups and the right therapist can be helpful in exploring and working with them or helping you to approach talking things through in a constructive way.
If you are experiencing feelings of not good enough, shame, anxiety or low mood, consider exploring this with a therapist or contact your local NHS service to explore options for talking therapies and CBT (Cognitive Behavioural Therapy).
These approaches can support you in reframing thoughts and taking action towards your goals.
What do you think non-disabled society needs to understand about what it’s like to live with a dynamic disability?
People with disabilities are the biggest hidden minority in this country and contend with ableism in most arenas. We’ve still got a long way to go in working through the binaries of life which keep us stuck. Just because someone looks “ok” on the outside and is out doing fun things one day, doesn’t mean that there aren’t bad days and life isn’t difficult at times. If someone looks young and fit and asks for your seat on the bus, let them have it. They may have already spent time agonizing about whether or not you’ll take them seriously.
You can be an ally by learning more, being curious and asking your friends and loved ones how they really are, particularly if they always say they’re fine. My own experience of being in a relationship with someone with a dynamic disability is that it has brought us closer and made us better at talking through the difficult stuff and being authentic with each other. It is also only one aspect of them, just as my condition is only one aspect of me.
There are massive strengths in people who manage dynamic disabilities which are often under-rated by us and others. However, they may not have wanted to develop amazing planning skills or the power to advocate but have had no choice. It can feel like a full-time job navigating the health and social care system with dynamic conditions, and that’s before you’ve even got to an appointment.
One of the challenges of living with a dynamic condition is managing energy and taking appropriate steps to look after ourselves in a society which champions some bodies and abilities over others.
The idea of “energy accounting” can be really helpful for many people - here is a link to a blog which talks about how to implement an emotional bank and savings account: My Energy Bank Account | ME/CFS & Fibromyalgia Self-Help (cfsselfhelp.org)
If you would like to explore the potential of working together, please get in touch on breadandrosescounselling@gmail.com to book a free 30 minute consultation.
