Spoonie talk - What came first? Your pain?, or, your depression? | by Fibrofly73 - FibroFlutters Patient Advocacy Organisation

After reading the study, ‘Impact of Pain on Suicidal Thoughts and Behaviors‘ via EDS Info (Ehlers-Danlos Syndrome)‘, my brain began to slowly remind me of my past and the very long battle that I endured regarding my pain versus my mental health. The persistent lack of understanding and being made to feel like I was lying and making my health problems up. It’s bad enough when our nearest and dearest don’t believe us or understand us let alone our own Medical care providers. I do, personally, find the Article and study to be an interesting read, but, with not so surprising statistics really.

Please note: The purpose of this post is not to review the article and I speak with reference to my own experiences regarding chronic illness, pain, depression and anxiety over a the course of 20+ yrs and how suicidal thoughts were present as a result of events and occurences connected to my chronic illnesses.

Pain was here first! Not my depression!!

After years of not been believed and told nothing is wrong with you a person is, surely, going to be mentally traumatised!?

In my opinion, this study shows us all the more reason for the medical professionals to start to taking a more ‘united’ and ‘Holistic’ approach to treating patients with #chronic pain #EDS & #Fibro and also view us more seriously, in fact invisible illnesses and chronic illlness ‘per se’.

Here’s a splash of my 20+ yrs history and experiences with PAIN versus Depression

Reading this brought back 20yrs worth of personal experiences of living with –

Chronic pain and Arthralgia
Chronic Fatigue
EDS Hypermobilty (Primary Illness) since birth diagnosed aged 39
Anxiety
Gynae and period problems since they began
Hypersensitivities to light, sound, taste and touch, smell and even medications.
Skin disorders since a child

plus other illnesses, including –

Chronic Health Anxiety
Fibromyalgia
Sleep disturbance
IBS (c) & OBD
Allodynia, Parasthesia, Hyperalagesia
Umpteen skin conditions including psoriatic eczema that attacks my hand & feet.
Depression
Social Anxiety
Stress
Constant risk of infection

and even a couple of mental health breakdowns…

… it’s a constant battle with all of them each having a knock-on effect on each other.

We still have to remain positive

However, when living in constant pain it isn’t just about the pain is it?, especially when living with an #invisibleillness #chronicillness such as a Chronic Pain Disorder, EDS/Hypermobility, &/or Fibro, MS, Arthritis… just to name but a few, for instance.

Over time our mobility levels seem to drop and a variety of other health & disabilty issues begin to arise and then the depression & anxiety often also take a hold.

In my case I became housebound without a clue how to actually get the help I needed and surrounded by people who thought there was nothing wrong with me, I was lazy etc,.. Being housebound caused a lack of social interaction for longs periods of time and I developed social anxiety… on top of my health anxiety & depression.

This was very stressful time without having a diagnosis, and also, because, apparently, there was nothing wrong with me to try and fix according to the umpteen x-rays and varying tests coming back normal all the time. Although, I was slowly being diagnosed with things by the time I was in my late 30’s, such as Longstanding muskoskeletal problems and connective tissue disorder possibilities, and IBS, psoriasis, autonomic system disorder of some type… and so on… even Chronic Fatigue by the time I was 35.

I used to be an athlete so I knew that I needed physiotherapy because my body was deteriorating and becoming weaker as I began to lose core muscle but I could not access it without a definitive diagnosis. I was referred for physio assessment to so they could arrange what kind of physio I needed when the physio referred me to Neurology for MS testing, which never happened because he referred me back to Orthapeadics who sent me to him in the first place!

Anyhoo! The Physio department couldn’t treat ‘something’ if they didn’t know what that ‘something’ was in case they ended up treating me for the wrong thing and causing me unneccessary damage. I understood that and accepted it but it drove me insane and yes, there were times when suicidal thoughts passed through my mind. I was trapped in a painful nightmare with no way out.

This last 6/7 years I have gotten progressively worse. I can’t do any more than I’m doing already to treat and manage my health conditions around each other there’s just too much to manage. Just when you manage to balance a problem and get it back under control a new one kicks in. Cause and effect doesn’t help either when one health condition can easily set a different one flaring at the same time 😮

Being housebound caused a lack of social interaction for longs periods of time and I developed social anxiety

Personally speaking re: taking a holistic approach – it would be so much easier if I could have access to a team of specialists who have an interest in our conditions to help us holistically manage everything together, rather than one by one, and give us say…

at least one set appointment where the whole team is there to discuss how the patient is coping with everything and if there are any problems to look into.
make appropriate &/or neccesary changes to treatments

My husband takes care of pretty much everything in the house and I’m lucky to have a domesticated partner. He’s my carer but also my husband & best friend. My illnesses also affect him and our life together aswell as our relationships with family & friends.

After being agile, active, proactive & always on the go….
…. of course I have often had the tendency to think it would be better if I was gone!

Thoughts of suicide & ending the pain to end your suffering?

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(Please find details for mental health support at the end of the post)

What privacy and independence do I have left now? when I rely on others so much with my day to day living. I can’t even go away to visit friends on my own anymore as my hubby needs to be my disability assistant. Hubby does all the cooking as I often lose the full use of my hands to Arthralgia & inflammation caused by Psoriatic Eczema caused by having a connective tissue disorder (EDS Hypermobility) (Typing this epic rant will trigger the inflammation)… all adding to the list of stressful things which affects my depression and general health!

In fact my anxiety has been that bad over the years that now I’m on the high risk list for heart attack/stroke… there were other contributing problems such as lifestyle factors

Every aspect of life changes and we have to adapt physically, and mentally. Mentally it is hard to make these changes when doctors are telling you there’s nothing wrong with you, tests are normal & x-rays fine 😉

They don’t believe you so you end up thinking you’re crazy! 😛

However, before we can make changes to the way we view ourselves and increase our positive outlook #mentalhealth we need to accept our chronic illnesses. The afore-mentioned regarding ‘there being nothing wrong’ and ‘tests are fine’ do make it easier for us as the patients to understand that acceptance is impossible to reach!

It is a negative thought process that goes round and round until we are taken seriously.

How can we accept our chronic illness when our doctors don’t accept it to begin with? 😮

Welcome to acceptance… kind of!

We accept that it’s not going to go away, and that it’s persistency at chopping and changing what kind of pain it will be today and, of course, whereabouts will it be the worst, will always be a daily challenge!?

We all ask…. Have I taken my meds? Did I? Can’t remember?

We all say….

“I’m so exhausted”
” I’m cold all the time and in pain”
” I feel like a burden” – suicidal thoughts would have you believe you’d be freeing your loved ones from the burden you think you are to them
“I’m sick of the sticks and the wheelchairs” – Loss of independence is high on the list of suicide reasons due the strain and frustration the changes have psychologically.
“Can I not just have one day without any pain or illness” – On a day when your mood is particularly low and you’ve had high level pain for days on end, during a flare-up for instance, it is easy to start considering alternative methods of ending that pain. Especially, if it’s chronic and long-term!

Personally, I want to run again, go out dancing and feel the energy flow again… but I know that won’t happen without me suffering extensively for a long time after, well running wouldn’t happen at all LOL.

With respect to myself the loss of my physical independence has been the toughest to accept due to being an athlete as a youngster who was into all activities and sports. I’d be out on my bike or walking and only ever sat in the house during the darker months of winter. My jobs were always manual labour within hotel & leisure industry, hard physical work on the body. It often gets me very depressed, especially, when I don’t get out of the house for weeks at a time.

Is it any wonder that my mental health has suffered?

These things are natural things for people with chronic illness to feel and think. It frightens me that people still discuss it likes it’s wrong to have these feelings, fine CBT and helping us to think more positively works, and, I advocate it as a therapy for people with any Chronic pain disorder, or, chronic illness but the context in which it is meant is still not correct.

There is a slight hint of the suggestion towards the end of the article that triggered this rant that suicidal tendencies are a part of depression & depressive disorders, therefore that’s the cause of those suicidal thoughts / tendencies… and not the actual pain.

Ok I’m in pain and have had suicidal thoughts because of it, so why isn’t that to blame? then I get depressed because of that!

It’s like an algabraic formula that is written wrong!

Panning back in time to my 20’s again I got labelled with depression when I initially complained about my pain and dislocation problems. Hahehahe! I didn’t accept that as the cause for my pain then (20+yrs ago) and I still don’t today. I became depressed about my pain because no-one would take me seriously and the only way they’d do that was if I’d have psychotherapy first.

In my opinion, the doctors actually caused my depression by sending me for the wrong type of counselling where my history was brought up which spiralled me into the netherworld of nowhere for a couple of years. I won’t get those years back! and they referred me for psychotherapy… many thanks for that!

I was naive and refused the treatment which meant my doc dismissed me for all treatments including the induced depression he caused. That was 20yrs ago.

People are still experiencing these types of scenarios today #invisibleillness #chronicillness

At that time when in my 20’s I chose to no longer see one particular doctor and only went when desperate for medications & in dire need for pain, skin infections, or, for the mandatory sick notes. I didn’t feel I could trust the doctors to see, hear or believe my problems 🙁

I took matters into my own hands

So, then back when I was in my early 20’s, I chose to move forward with a more positive outlook towards self-management. I took to holistic and alternative practices with essential oils, I learned about relaxation and mindfulness, I even used to go swimming and watch my diet. I ditched the doctors for a couple of years until dislocations kept putting me into A&E and my health problems had multiplied over time (early 20’s 20+yrs go). Incidently in present day and age I have reverted back to the essential oils!

Of course I am now under the care of a good doctor’s surgery and they & therapy have helped me a lot. I have a lot to be thankful for 🙂

I have since received the correct mental health therapies through Sunderland Mind Centre & Sunderland IAPT – Improving Access to Psychological Therapies for my anxiety and to also deal with what happened regarding my illnesses for the last two decades. If only I’d been taken seriously I would have been diagnosed with Hypermobility EDS 20 yrs sooner and been able to prevent most of the disabilities that I have today. I may even still be working, cooking and dancing.

No amount of postive thought, counselling or medication is going to give me back the life I’ve lost this last 20yrs and it’s those type of thoughts which make people commit suicide. The thought of continuing for another 20yrs like this and getting worse due to the lack of mobility….

…. well it’s not pleasant to think about when you’re only 42yrs old 😮

I’m fairly sure many will read this and associate with it too.

If you find yourself having suicidal thoughts please speak to someone. I have given a few web addresses for Mental Health Support at the bottom of this post

Just to reassure you, I’m not suicidal just a fellow spoonie sharing my bad experiences with pain, chronic illness, depression and anxiety. After taking a walk through my past it would appear that nothing has really changed in 20yrs with respect to mindset and reality, except…

There are more understanding doctors these days.
More research studies to refer to.
Better treatment plans / options.
Patient choice & self-care options.
Different types of treatment now.
Medication choice is bigger.
There are specific doctors for specific health matters rather than just general.

So bringing us all back to the present day… things do seem to have progressed!