Millions of people in the UK are living with a chronic illness such as ME/CFS, Fibromyalgia, Post Viral illnesses such as Long Covid and other energy limiting conditions where there is no known cure.
As the symptoms of many chronic conditions are hidden to others, some people are living in relative silence, often fearing that they won't be believed. I have lived with periods of Chronic Fatigue/ME and subsequently Long Covid for over 25 years. This doesn't make me an expert, as I fully appreciate and respect that everyone's experience and journey is different. However, I have gained insight through my own and other's experiences, of the common themes and issues that people with chronic illness face and feel passionately about shining a light on this hugely misunderstood area of health.
Find support
This may seem obvious but finding those who understand or are willing to listen without judgment, pressure or expectation can be a gamechanger. Even if you do have family or friends, they may not always understand your internal experience. Whether you find additional support through groups, podcasts, wider family/friends,1:1 therapy, community groups, nature or pets- it is important to alleviate any feelings of loneliness or isolation that you may be experiencing. I was super sceptical about joining support groups to begin with as I didn't think it would be helpful and that I may ruminate further about my illness. However, I found that in my darkest days just having that regular space to 'show up' even if I was feeling terrible and didn't have the energy to speak, helped to validate my experiences, feel visible and connected to others. Facilitators often also have their own lived experience, so it can help you to be more open and honest without fear of judgement.
Understandably, groups are not for everyone and services can vary wildly in their accessibility particularly if you live in a rural location. Find a way to create a unique, safe recovery space that works for you, reflects who you are as a person and matches where you are at in your own journey. This may involve stepping into the unknown a bit but it could make a huge difference to your recovery. Whether that is through accessing low cost talking therapy, journaling, taking gentle nature walks with others, researching specialist restorative yoga groups, or joining any online communities that are sufficiently moderated. It all helps, so try and make time to connect with yourself and others wherever possible, even if it is for a few moments.
2. Take 'advice' or 'cures' from others with a pinch of salt
We just want to feel better. How many hours have you spent researching different treatments, desperate for a cure? I personally spent time and money on things like reiki, acupuncture, somatic physiotherapy, cranial osteopathy, herbal medicines, mushroom supplements and much more but nothing seemed to work and sometimes I actually felt worse. Within this desperation to feel well again, we can overload our body with too much before it is ready. You may also have experienced well meaning friends sharing you tube videos or website links to crazy supplements or 'experts' claiming they know either the cause of the condition or the cure. It is ok to ask people not to share things with you if you are feeling overwhelmed and also take a break from undertaking different treatments to allow your body some time to adjust. I decided to work on finding more simple ways to regulate my nervous system to support my body to get into a more consistently stable place to decrease the frequency of flare ups.
Sometimes shifting our focus more on going back to basics first- regulating sleep (which I know is so, so difficult in chronic illness), nutrition, rest, light activity and stress reduction can provide a helpful foundation. There is no doubt that some people do find the right treatment for them which hugely impacts their recovery trajectory and whilst there is no harm in sharing these, remember that we are so uniquely different and one size does not fit all.
Whilst arguably chronic illness is still hugely under researched and underfunded, there is some existing and emerging research out there, particularly since Covid. Learning and educating yourself about the basics and how it affects different system in the body, e.g the immune system, respiratory or nervous system, can be worthwhile. Any insights may help you to make more informed decisions about your own care, if you do decide to investigate different alternative treatments. The body has tremendous healing capacity and chronic illness throws this innate knowledge into chaos and confusion. Go slow, trust yourself, try not to override your gut voice with external ones where possible.
3. Allow yourself to feel ALL the feelings
It can feel depressing and anxiety provoking at times living with any chronic illness- especially when the present feels so challenging but future feels so uncertain and hopeless. I had previously valued my stoic upbeat nature, resilience and hyper- independence but during the throws of chronic illness, I realised that some of these were coping mechanisms I had developed to avoid burdening others (very much learnt behaviour from childhood!) I needed to take a risk and get a bit vulnerable, so that I could be a bit more honest about what I was experiencing with those around me. I found that some friends and family members drifted away, as I no longer had the energy or health to maintain the relationships in the same way or to be 'the old me'. This felt like a double whammy of sadness and loss at the time, particularly when I needed people the most. I came to realise that some relationships are not built to endure the profound shifts and identity changes that often come with chronic illness.
You need to allow yourself space and time to grieve the things you have lost from your life before and accept that you may not be able to be present for others in the same way, whilst you focus on your recovery. It is not your responsibility to make things palatable for others. Chronic illness is already exhausting, distressing and confusing enough at times to manage. It is of course, important to stay hopeful wherever you can but also allow difficult feelings to arise. All feelings are valid on this journey and whilst there is temptation to deny and push challenging ones away, let them in with kindness and care if you can.
It is also your choice how much you wish to share about your illness in interactions with others- sometimes you may just want a bit of distraction and to chat about other things! Find safe places with safe people who can hold space and be alongside you without expectation. Whilst some people step back, others will step forward. Sometimes, gems shine through in places where you were least expecting them and these people will be a crucial part of your recovery journey.
4. Re-frame what recovery means to you
Life may look very different during and after chronic illness. Putting our health first is not selfish but can be incredibly difficult for many of us to do, particularly as we live in a society that values productivity. In the beginning we can put pressure on ourselves to make a full recovery and push our bodies beyond it's limit so that we can go back to our normal lives. I pushed myself on through a very difficult and traumatic work situation which impeded my recovery further. In hindsight, it would have been helpful to have stopped work immediately but I was not in the financial situation to do so and I know many others will relate to this. However, what I did learn is that we sometimes have to ask for help, take calculated risks, make sacrifices, adjustments and changes in our life in order to support recovery. We also may need to re-adjust and lengthen our recovery timeline and look at changes over a much longer period. As we know, symptoms ebb and flow depending on so many factors including hormones, stress, illness and post activity fatigue, so it can sometimes feel like we are going round in circles.
Recovery is a subjective experience and it is important to validate any milestones that we reach, no matter how small and treat ourselves with love and compassion when we encounter setbacks. Whilst these elements are not a direct cure for our illness, developing kindness towards ourselves allows us to develop a more gentle and mindful acceptance of what is and what may be. Incremental changes are so significant in any journey and they can build towards the bigger picture of recovery, however that may look for the individual.
I hope you have found some of these points useful or that they have resonated with you in some way. Thanks for reading and look out for more blog posts coming soon!
If you are living with chronic illness and would like some support to navigate the challenges, I offer 1:1 coaching and therapy both online and face to face. Book a free introductory call here: https://calendly.com/growinyourowndirection
I can relate. Sensitively written 🙂.