Accepting Chronic Illness – Fibromyalgia / Chronic Pain / Chronic Fatigue Syndrome / ME / EDS/HMS / MS / Anxiety / Depression / IBS / Invisible Illness
Accepting any of the above mentioned #chronicillness / #invisibleillness can be a difficult and stressful process for the patient, and their family, friends and carers as we explore each angle of the illness/disease and how it appears to be affecting us. We then go on to learn from Information sites, forums & other ‘sufferers / survivors / warriors / spoonies’ how bad our illnesses / diseases ‘could’ get, however, we do also find that some of these fellow #spoonies have fought just as long and hard as ourselves for recognition and diagnosis.
Questions you may now be asking yourself:
- Have I been diagnosed with Fibromyalgia or another kind of Chronic Illness?
- Have I accepted it as a diagnosis?
- Did I find it a difficult and stressful process?
- What problems did I encounter, and how did I fix them? #copingstrategy
- Am I still coming to terms with the chronic illness and am I still in the acceptance process, how am I coping?
- What are the positives that I have discovered since accepting my illness? #positivethinking
Once you had accepted your Chronic Illness, for example Fibromyalgia,
- How did it make you feel emotionally?
- Did you feel relieved, or, a bit saddened by the realisation?
- Were you overwhelmed?
- Did life and things in general become easier to cope with and manage?
Acceptance & Grieving process
Acceptance is often viewed as a grieving process, which is a great way to look at it because we do mourn our old lives from when we were fit and agile.
It can be a very emotional and anxious time because our lives need to change in so many ways so that we can adapt them to what our illnesses will allow us do. We do mourn the losses of our independence, mobility, social contact and possibly even our jobs / livelihoods.
Chronic Illness, Chronic Pain & Fibromyalgia etc, often causes us a lot of pain and discomfort, which can affect our general abilities relating to ‘mobility’, and / or ‘cognitive functioning’, thus meaning, as patients we are often very debilitated. It can take a long time for us to accept some of the changes that our Chronic Illness cause.
Don’t forget you’ll also grieve for those favorite foods you can’t eat anymore, and/or for the fact you can no longer go and sink a few pints down the local boozer anymore either. 😮
Cinemas and restaurants become uncomfortable 😮
Fall asleep during movies and/or lose interest/focus quickly.
Social life dies 🙁
And people wonder why we’re so depressed!?
Mental Health Concerns
Personally, I think during the period of ‘grieving and acceptance’ that talking is essential and key to understanding what is actually happening. So many things happen all at once which can be very stressful and difficult to manage. In my opinion, it is at this point that counselling, and talking therapies, should be offered as it is during the period of acceptance when our emotions dip and dive so much and possibly quite erratically at times. If acceptance of Chronic Illness is compared to the grief of someone we love dying then that alone should suggest the need for Mental Health Support to be offered. It is up to the patient to decide whether they ‘accept’ the offer, or not, but at least they are given a choice, I suppose that this could be translated into something positive at the start of someone’s Acceptance journey.
There are anxiety management courses for example, I found mine to be of great help and educational but more than anything… reassuring. I also have had a support counsellor who I talk to through Mind, a charity for Mental Health who have helped me enormously during Diagnosis and Acceptance. 🙂
Pain Management courses are also a great way to help you with the Acceptance of your Chronic Pain, and Fatigue, as well as to understand why you feel the way you do. You learn how to manage your life around your pain or illness.
It is said that Distraction Therapy can help us to keep positive, remain calm and unstressed and lower our pain as a result. Arts & crafts are an excellent way to distract oneself and many people take to crafting during their periods of Acceptance. Taking up hobbies, joining support groups where you live, and online, can all help to provide you with new friends, extra support and plenty of new distractions.
I use guided therapy as a distraction technique for meditation and relaxation purposes, the art of practising mindfulness and the use of breathing techniques for pain management, and mental health issues such as my chronic anxiety disorder. Over time things like this do get easier with plenty of perseverance, and practise.
In today’s new World of technology there are Apps available to help monitor health conditions, obviously too many for me to just randomly list, but their purpose is to help alleviate health issues, monitor their progress and also offer solutions. Mental Health Apps can help to boost your mood by sending you positive messages and words of positive intent. The World of AI, science and tech providing solutions and helping you to cope and manage your conditions.
There are also numering communities and social media platforms for people with chronic illness that can provide real support to those who don’t have anyone and are living alone with their illnesses. For some that are disabled and housebound social media is their only source os social contact so it’s level of importance in the World of chronic illness is very high, as together people help each come to terms with their diagnosis, and help each through their chronic journey’s.
Check out our SoMe Platform section of the website >>> STILL UNDER CONSTRUCTION but still usable we’re just still adding things and busy restructuring our website!
Distraction Therapy also helps #mentalhealth #anxiety #depression
A chronic illness like fibromyalgia (FM) changes your life. It can be hard to accept those changes, especially when it means giving up things you care about.
When you’re adapting your life to chronic illness, it’s normal to go through a grieving process, just as if someone close to you had died. ~Adrienne Dellwo
THINK POSITIVE – #mentalhealth
Remember you have already endured the diagnosis process and survived…
… you are a warrior 🙂
Anxiety & Depression – don’t just appear over night because we get told that we have Fibromyalgia or other Chronic Illness.
We’ve probably all heard at least one of the following phrases at some stage during the diagnostic phase of our Chronic Illness, Ehler’s Danlos Syndrome Syndrome, Musculoskeletal Disorders, Fibromyalgia, CFS, ME &/or other Invisible Illness.
‘It’s all in your head’
“everything looks normal”
“the x-rays are looking perfectly fine”
“your blood test is normal”.
“there’s nothing wrong with you”
Remind yourself daily
They were wrong!
You, were right!
Wishing you wellness
Many thanks for reading
Carole Sian x
#Zebra #EhlersDanlos #EDS #JointHypermobility #hEDS #HSDs
#spooniewarrior #invsibleillness #musculoskeletal #rheumatology #chronicpain #fibromyalgia #CFS #ME #MentalHealth
Advocating for a Multi-Disciplinary approach to all aspects of medical healthcare. With a model approach using all the ‘stakeholders’ I’ve designed a patient’s perspective of what patient-centred care, patient-included, patient-involved, patient-centric should look like and involve, that’s everyone by the way!
You all need to pitch in!!
Useful sources & links:
About Health – about.com – health
Patient – Patient.info
NHS Choices – www.nhs.uk/pages/home.aspx
Fibromyalgia Action UK support, advice & information – Charity – fmauk.org
Fibromyalgia Action UK Community Forum for advice, support & information from people like yourself – healthunlocked – fibromyalgia-action-uk – Community Forum
FMAWARE Magazine – www.fmaware.org/fibromyalgia-aware-magazine/
National Fibromyalgia Association > FM Aware < Home Page – www.fmaware.org/
Fibromyalgia News Today (FNT) – fibromyalgianewstoday.com/
HMSA for support, advice and information regarding Connective Tissue disorders such as EDS & Joint Hypermobility Syndrome – HMSA help-advice about local-groups
ME Association for support, advice & information regarding ME – ME Association – information &/or find a local support-group
Samaritans – www.samaritans.org/
More links may be added.
Content may change during updates
I’m not a medical professional just a fellow Spoonie sharing information and experiences with you
Header picture is from www.canstockphoto.com
Updated may 2017
Updated July 2018