How to cope with chronic illness is quite a big topic and one I'm still learning because chronic illnesses can be unpredictable and progressive and so our ways of coping also need to adapt and change with our health.
This post is going to explore:
Anger
Self-Care & Managing Symptoms
* I will be using personal experience in writing this post as examples of what I'm talking about. I am not sharing this for sympathy, but rather to build on the content and raise awareness.*
Fighting for Your Diagnosis
Part of having chronic illnesses can be the medical experience of being dismissed or even gaslighted by doctors even though you know something isn't okay - remember you know yourself best and it's okay to ask for a second opinion or referrals to specialists.
Personally I've had a pretty negative experience with getting support and treatment with the NHS and have had to go private on a couple of occasions in order to get a diagnosis or proper support in place, but I realise this is a privilege not everyone has.
It can feel like there is a barrier in getting support from doctors at times, so lets look at what you can do and getting the most out of appointments.
make a list of all your symptoms, it can be useful to note the frequency of them, the intensity of them, how long they've been going on for, and any other relevant information, e.g. night sweats on lower half of body that only happen in the lead up to menstruation.
The impact of the symptoms e.g. night sweats disrupt sleep and make it difficult to stay awake in the day time. Disrupts work and day to day life.
What you've tried so far including medical history, medicines taken, herbal treatment etc.
What you are hoping to get out of the appointment - are you looking for a referral, treatment, management, support?
It can be useful to colour code all of the above information with what feels most important to get out of the time you have and then what is useful to know. Often GPs will stick to the one symptom for the 10 minute appointment which is so difficult when with chronic illness you have a list of symptoms that all interact. So take some time to figure out which symptom you feel is most important to mention and then hopefully your GP will be open to hearing the domino effect this has with other symptoms. This can be really frustrating, especially if you're not sure because they're all so closely related, I have found it useful to state this in the appointment e.g. "I have a few symptoms which all feel like they have a big impact and interact with each other, how do you recommend me prioritise one?"
If you feel you will need more than 10 minutes because of multiple symptoms and being unable to separate them out, try to book a double appointment. This isn't always possible as I know a lot of GP surgeries are inundated with patients, but it's worth a try!
Where you can, it is useful to take someone with you who can add their perspective of how your condition impacts you and can prompt where necessary.
Stay firm in what you're asking - it can be useful to do a little bit of reading around what you're hoping to get out of an appointment and knowing what you're entitled to with support. e,g. I know that extra pain relief can be offered for coil removal/insertion. When I asked for if this could be done the GP asked me to repeat what I was asking for 3 times and then laughed at the idea of needing it because the teaching is it shouldn't be painful (even though it very much is!). I know my body and know that any procedures like this cause pain for days afterwards and unbearable pain at the time so I stood firm in what I was asking and was eventually given options.
Look at advocacy around support you can get in appointments and regards to ongoing support. I will list some advocacy services at the end.
The NHS actually has guidance on questions to ask in an appointment - https://www.nhs.uk/nhs-services/gps/what-to-ask-your-doctor/
When getting test results it can be useful to ask what the next steps are regardless of the outcome. If your results are showing something then you will need to know what this means and what to do going forward, but this is also important for if test results don't show anything - even though this is often framed as a "good news your results are fine".... so then what's going on with me?
If you face any stigma in appointments this can be especially challenging. The biggest one for me has been focusing on my weight as a way to manage symptoms. The biggest tip for this that I've learned is to ask, "what would you advise a skinny person in this situation?" to see if there's any options they're avoiding just because of weight. And this kind of question could be useful for multitudes of discrimination & stigma: "what would you advise a monogamous/white/male/cis/straight/skinny/young/older person?"
It can also be useful to ask your GP to note down on your records if they are refusing to offer any referrals or treatments.
Pros and Cons of a Diagnosis
Pros | Cons |
Access to specific treatment for that condition | New symptoms automatically being put down to diagnosed condition rather than being investigated further |
Access to extra support due to diagnosis e.g. PIP | Misdiagnosis may be made |
Sense of relief & validation in knowing what is going on | Lengthy process for some conditions |
It is really up to you how much you push for a diagnosis from your appointments. My GP has an ethos of treating the symptoms rather than always focusing on a diagnosis - this was especially true for my fibromyalgia diagnosis as they "didn't want to put their name next to a fibro diagnosis, didn't want to diagnose me so young, wanted to focus on the symptoms" and so this is when I went private to a pain clinic as I felt like there were too many symptoms to look at individually amongst other reasons.
Medical Appointment Fatigue
Often with chronic illnesses we can get medical appointment fatigue, this is where our capacity is overloaded due to medical appointments, chasing treatments, chasing referrals, keeping track of everything etc.
It can also be from the appointment itself. As you have seen in the above section preparing for an appointment can be time consuming, then the process of having the appointment can take its toll with waiting for the appointment, sitting in the waiting room, experiencing dismissal from doctors, or having positive results and processing what this means, to then going away and looking into what your next steps mean for you. It is a lot. it has both physical and emotional impact.
All of this can be so exhausting an debilitating, especially on top of our day to day lives. This may be where we have to ask for help from those around us or services in order to manage our medical wellbeing.
Other than asking for help from others, the best way to cope (anecdotally from my own experience and the experience of those around me) with medical fatigue is to give yourself space around the appointments. This might mean 10 minutes to go back into the waiting room to decompress before leaving or it might mean taking the week off around the appointment in order to prepare and recover - this will really be dependant on your responsibilities and dependants in life but it is essential to put in some time for caring for your wellbeing around your appointments.
The Grief Process
Having chronic illness brings an element of grief with it. The grief can be around the person you "used" to be and how that's now changed or feels limited, it can be grief for the life you imagined for yourself, it can be grief for the loss of independence you had, it can be the loss of relationships along the way due to impact of chronic health.
For me, it has been all of the above. I have multiple chronic illnesses and it has meant my life has completely changed to what it was and what I wanted it to be. I can no longer do exercise how I used to and that was a big joy and way of coping for me so I really notice its absence. The grief process has been ongoing and adapting with time as I learn more about my own limits and what is possible for me.
This process can become more complex when you have multiple conditions as you may be coming to terms with one condition and then be investigating another which means re-analysing everything again.
I talk about how to cope with grief here and the biggest way of coping for this is to offer yourself compassion and grace with what you're going through. I think the dual grief model is really good at showing how messy and unpredictable grief can be (even though this is based on bereavement I believe it is transferable to most losses as a process) -
It is so difficult and it can be that those around you don't always understand unless they have experienced a chronic illness themselves (first hand or second hand) - though it is important to note that loved ones may also go through their own grief process in relation to your illness too as it does have an impact on them as well. Finding someone or people to talk to can also be important so that you don't feel so isolated in it all. This could be a friend group, trusted loved one, support groups, therapist, a therapy group etc. There are always people out there ready to listen and be there with you.
Focusing on the "Can dos"
It can be easy to fall into despair and focus on all the negatives that come along with chronic illness; whilst it is valid, understandable, and definitely needs space to be acknowledged, there are still things within our control and that we can do for ourselves as well as there being good in the wider world - you still have a life to live as much as you can.
I am not saying ignore the bad and only focus on the good, but rather to allow space for both of these to exist. Part of this for me was acknowledging that I couldn't do a lot of what I enjoyed, but I still can do a lot it just needs to be in a different way. I might not be able to go for a run anymore, but I can still go for a gentle walk. I can still do gardening, I can still spend time with my dogs, I can still eat delicious food; they just need to be adapted. I remember getting diagnosed with fibromyalgia and the consultant said to me (roughly), "we can not cure fibromyalgia we can only treat it to the best we have understanding of, but the aim is that you are able to live a life with fibromyalgia rather than fibro being your life". Now, I realise that this will be different for everyone and the intensity of what you can/can't do will vary as well, so I know it won't be as simple and can be much more challenging than "just" accepting how things are and focusing on what you can do, it takes practice and time to come to terms with and process.
Anger
I have found, and seen, that anger is a big emotion that comes up with chronic illness.
Anger at yourself -it may be that you're angry at your body for letting you down and feeling limiting. Or maybe it's anger at your past decisions that could have led you to this point.
Turning anger in on ourselves can be damaging in many different ways, but in relation to chronic illness it can actually add to our symptoms. It can increase heart rate, blood pressure, and impact other physical sensations. And so it becomes a cycle of self destruction.
Anger at society - There can be a lot of anger directed towards society and it's limitations, inequity, and inequality. Accessibility in society can often feel like a token gesture where it isn't thought through enough and clearly doesn't have someone with access needs designing or helping. Just take a look at most wheelchair users on Instagram sharing their experiences of being out in the world and you'll quickly see how inaccessible accessibility is!
On top of that there is also still a lot of stigma around being chronically ill or disabled where people are infantilised, shamed, or harassed.
This can be apparent when focusing on what we can do, it is still then within the limits of our own body, mind, and society.
There's also a lot of anger at the systemic issues especially within healthcare. We need the NHS and we are so reliant on it, but because of it's funding cuts, understaffing, programmes being cut, wait times etc. we are being sorely let down with getting the needed support. An example, I got diagnosed with Fibro 4 years ago and I am still waiting to see a Pain Management Service due to 5 incorrect referrals to out of are clinics or just wrong clinicians and now my appointment has been cancelled with no resolution. It becomes laughable with just how ridiculous it all is but underneath is a lot of anger as I am left to figure it out and make do by myself in the meantime! Then bear in mind that for many of us with multiple chronic illnesses this is just one task of many we are having to process, follow up, chase, fight for - there is a lot of anger, frustration, disappointment, and outrage.
Anger in general - There can be anger in a wider sense of just being angry at the universe for how things are.
What to do? - Anger is a difficult emotion to process and express, especially in society where anger for AMAB people can be misconstrued as aggression and where anger for AFAB people can be seen as hysterical and overreacting. BUT anger is normal and human, and there are many ways of expressing anger in a healthy way:
physical exertion - this might be exercise (run, jog, fast walk), it could be punching in a safe environment (boxing practice, punch bag, pillow), it could movement (shaking your body, pushing against the wall, dancing, pole dancing).
Vocalising - this might be talking to friends or a therapist or it could be screaming in a safe environment or into water/pillow/hands.
Writing - maybe it helps to write down what's making you angry, or just writing random words that are on your mind, I used to find writing all the words out in bold across a page and then going over all of them until they rip the page a good release.
Music - listening to music and feeling the emotion this way or singing/shouting along to music.
It may be a mixture of all of the above!
Separation of Body and "Self"
I have found that when talking about chronic illness or illness is general we tend to separate out our body and our self e.g. "I really want to write this blog post but my body is in a lot of pain and my fatigue feels too heavy" or "I feel like a prisoner trapped in my own body".
Often this is a protection to the sensations or feelings that are coming up for us. It is easier to talk about it with a little bit of distance between your "self" and the problem (your body). This makes sense, and it isn't necessarily a problem until it becomes a cycle we feel stuck in where we are constantly blaming and degrading our own bodies which are a part of ourself.
Compassion is the best way of combating this, in my experience. Being able to hold all parts of ourself with grace and compassion can make a huge difference. This can mean trying to take note of when we are talking about ourselves negatively - whether out loud or internally - and then practicing reframing what we've said with compassion.
Ways of doing this can be: imagining what you'd say to a child, a pet, a loved one, or a friend.
More on this - https://www.bezzybc.com/discover/living-well-bc/health-8-tips-to-practice-self-compassion-when-you-live-with-chronic-illness/
Pacing
Pacing is a huge topic with chronic illness, mental health, and disability. It is a real challenge to practice so please be kind to yourself when looking to implement ways of pacing in your life. I go into pacing in detail in my post here, but essentially it is finding a way to space out your day to day activities so that they can be more manageable on a long term basis rather than getting into a cycle of 'doing too much on a good day and then having a flare up for a few days'.
It can be hard not to get caught up in doing things when you're having a good day because you want to get them done and it feels great to have more capacity to tick off items on the to do list however overdoing it then means we are in a flare up for longer and we get behind again.
My tips for pacing:
Start small - pick a few essential things to schedule. At the moment I'm trying to get back on top of housework and having the house how I want it. My perfectionist over worker part tells me to just go for it, do all the tasks, it'll look and feel great. But I know this isn't going to work for me, and so I've decided to start small by allocating an hour a day to doing something in one room in the house, so this may be washing clothes and being done with that. This involves realigning our expectations with our reality - it would be amazing and the ideal to get everything done in one weekend but it's just not possible anymore for me if I want to function the rest of the week, and so I have to look at working back in the steps to what then feels manageable.
Reassess - Pacing means taking things slow and when we're not used to this slow can feel like we're not doing anything. And so it may be that we start small like above but we need to reassess because we didn't start small enough and it's still a struggle. As we then go on we might find that we can add bits in slowly over time.
Be patient and kind to yourself. You are not lazy, useless, worthless or any of the other things your internalised ableism is telling you. Your capacity it limited because you're dealing with a barrage of symptoms and still expected to function in society. It's a lot!
Do what you can - pacing is a wonderful concept for chronic illness when you are just dealing with chronic illness, however when we add work, families, houses, pets, other responsibilities on top it becomes much more complex and takes a lot more compromise. This will need those who your around to help with pacing, such as an occupational health and reasonable adjustment assessment at work.
Self-Care & Managing Symptoms
Self care is a combination of the mental self talk mentioned so far as well as the physical things you can do for yourself. I describe self care as short-term self care and long-term self care:
As mentioned self care is not a fix for anything but can help in managing what's going on for us. The title of this blog post is "how to cope with chronic illness" and if someone were to ask me right now if I am coping with my chronic illness the answer would be no, but I am managing it as best as I can around living me life.
Types of self care:
Distraction & Mindfulness -
Gaming, quizzes, puzzles, problem solving - these are great for taking my mind off the pain I'm in or feeling more present when fatigued.
Music - singing or humming along to music can be grounding and can allow some distraction as it forces you to be with yourself in the moment.
Crafts - colouring, painting, knitting, sowing, felt, crochet....
Writing/journaling
Practical -
Pill sorting and alarm setting - this allows me to know if I've taken my meds and reminds me to take them too.
Pacing my client sessions to have breaks for mental rest - I am very privileged to be able to do this for myself as otherwise I wouldn't be able to work, but having space to rest and recover between sessions is important for me to be able to work.
Being open about having chronic illnesses with clients to allow myself the grace for self management where needed
Having an idea of finances so that I can look into tools to help with my pain, fatigue, other symptoms.
Applying for disability support - this is a tedious and gruelling experience for many so I would highly suggest having advocates to help you in the process.
Sleep routines - reducing blue light around going to sleep, relaxation before sleep (I find sleep tracks help me).
Mobility aids - walking sticks, wheel chairs, stools to ease standing, push walkers, rails for bathroom use etc. You can get occupational health assessment for housing - https://www.scope.org.uk/advice-and-support/home-adaptations-occupational-therapist-assessments
Physical -
Baths or hot showers to ease pain or It could be a cold shower to reduce fatigue.
Naps when needed for fatigue, overstimulation, decompressing.
Pain killers when needed - speak to your GP about pain management
Comfy shoes/slippers for around the house.
Using heat packs, electric blankets.
Using weighted blankets to reduce anxiety and reduce some pain.
Trying to make healthy eating habits
Mental -
Forcing myself through fatigue - like with this blog post I sat with it open and started typing any words that made sense or didn't and the rest of it started to flow to make sense of it all (I hope!). It may be setting a timer to try and do something and if not coming back to it later.
Recognising capacity levels and resting where needed - this might be a more practical thing of noting down symptoms and activities (I've found Visible App really helpful with this), or it may be doing mental body scan check ins every so often throughout the day to assess if you need to slow down or stop.
Gratitude & Joy in the little things - sometimes taking a step back and recognising the smaller things in life that bring you peace can be important and helpful for your mental health. I love looking up and really looking at the stars & moon at night.
Spiritual/Connection -
Creating community and connections - this might be through religion, it may be creating community online, or it may be finding community in your local area. For me online has been so instrumental in coping with the bad days and celebrating the good days.
Asking for help
Therapy
Connecting with nature - being out near water, in the woods, bare feet on grass, or just in a local park can bring some relaxation.
Body Scans, meditation, or yoga.
Spending time with pets
What Therapy Might Look Like
Therapy with chronic illness is a process that follows similar topics discussed in this post. I have found that having a safe space to share frustrations, express anger, explore the grief and what it means to them, look at what is in their control, look at how they can see their life being with adaptations, look at ways of managing and coping, and focusing on compassion with self talk tend to be the main themes.
It doesn't necessarily have a particular order of things either as they all tend to run along side each other and intersect.
What might happen in therapy:
Validation of your feelings and experience
Learn how to recognise emotions/feelings in your body
Learn how to express your emotions/feelings
Explore trauma that may have impacted your chronic illness
Experience a safe & supportive connection to then have an idea of what this might look like in your "real" world.
Look at how you talk to yourself, where this narrative comes from, and how it can be more compassionate.
Celebrate your achievements, good days, gratitude.
Learn ways to regulate your feelings and symptoms.
and more...
This can vary depending on your therapists approach, their personality, how engaged you are, how long you have to work together etc. Check out my other blog posts for further info around this:
Further Resources:
https://www.nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service/
Access to Work - https://www.gov.uk/access-to-work
Turn 2 Us for financial and general support - https://www.turn2us.org.uk/get-support/
The Advocacy Project - https://www.advocacyproject.org.uk
POhWER - https://www.pohwer.net/
Voice Ability - https://www.voiceability.org/
The Disability Rights Org UK has further signposting and guidance that might be more specific - https://www.disabilityrightsuk.org/resources/advocacy-get-your-voice-heard
Mind info on Advocacy - https://www.mind.org.uk/information-support/guides-to-support-and-services/advocacy/types-of-advocacy/
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