I’m sharing my story because when I found enablie I was feeling frustrated and isolated while suffering from long-term pain and hidden illnesses. After a few emails with the enablie team, I realised that I was not alone and am sharing my story in the hope it is something that others can relate to. It is a rather long story, but I think that’s just the nature of the complex conditions so many of us face.
Hopefully, this encourages other group members to share their experiences/thoughts on how things are and how we’d like them to be and contribute ideas on how we think we might promote those ideas to make positive change.
Thank you to enablie for providing the safe space and saying ” it’s ok” to talk about this stuff because for me and I suspect for a lot of others, there’s a lot under that umbrella that’s just been brushed under the carpet for far too long!
Who am I?
I am disabled with a chronic hidden illness that has significantly affected my ability to lead a ‘normal’ life. My condition fluctuates which is probably the hardest part to deal with as the lack of consistency leads to both an increase in negative judgement that perhaps I’m ‘faking it’ as sometimes I feel fine and a horrible sense of grief as I sometimes catch glimpses of the person I used to be pre-illness.
However, I’m not just a ‘disabled person’. I’m a single mother with 5, no longer so little, children, the oldest of whom is also disabled and has been from birth. At the time I had them I was relatively healthy and had no idea just how bad my health would get. It’s horrible to admit, but if I’d had advance warning of how ill I was going to get I don’t think I would have chosen to have any children. At times, having them has felt like an additional strain as I’ve had to carry on giving when my tank is empty because that’s just what a mother does.
Now, with the youngest preparing to leave home, the shoe is on the other foot. Whilst I’m pleased for him, I can’t help worrying about the additional challenges this is going to bring to my own situation. Living on my own whilst I’m getting weaker is a daunting prospect.
I’m so proud that I’ve raised five children, all with very active, fulfilled lives despite all the challenges. Apart from the eldest, they are all employed which is fantastic.
Despite being mum and carer to my eldest, I don’t think I ever grasped how different and isolated she felt at times because she was always smiling and surrounded by people that loved and cared for her. It was only later that I discovered she too had struggled with painful emotions, both as a child and more so now as an adult despite having a loving relationship and achieving independent living.
From the outside, she’s done amazingly well. She’s got qualifications in choreography, childcare and art. She’s a fantastic singer and has always been very active. She drives, is incredibly independent and has always been a massive inspiration with a huge heart! I only wish I could have her strength of character! She says I taught her she could do anything she put her mind to. We would always find a way around everything….and we did ..the support for children then was phenomenal and we welcomed any help that would make our lives more comfortable.
She’s bravely adapted and overcome a lot, including independently travelling using an electric chair…something I myself may have to adapt to in the near future which terrifies me. I feel ashamed that I struggle to live up to the positive words I put on the table, in my naivety, with the unawareness of how big the challenges ahead were…even though she achieved them. Sadly, I’m not half as confident of her future as an adult as lots of the support she received dropped off when she moved from childhood interventions to the adult support team. Despite trying many avenues of establishing employment she is unfortunately still having to constantly find other alternatives to occupy her time due to her health not being consistent. Something that has a big psychological as well as financial impact on her.
I like to think my mum might have picked up on warning signs of illness, and I might have had the right treatments a lot earlier… but I was five when my mum passed, and my dad worked. I was the second from youngest in a huge family and I was overlooked a lot.
I withdrew and had alopecia between 5 and 7 and had my tonsils out around aged 9. I sometimes think that the tonsils were an early warning sign and wonder how many others who suffer from chronic illnesses later in life had problems with their tonsils early on.
I remember that my dad wanted me to go to the nearest senior school when I was 11 because he thought I had weak legs. I remember thinking at the time that I didn’t feel weak or in pain. I was unaware that I was taking an almost sitting position when my legs were tired until around the age of 25. Then I became aware. Not because my body suddenly told me, but because I overhead a ‘friend’ making fun of me and later I saw myself in a reflection in a shop window. I tried to stand straight and realised how difficult it was. I was mortified and wondered how long I’d been walking like that.
First brushes with disability
My daughter was born disabled and this was my first time experiencing disability as something that happened to me and my family rather than ‘other people’. At the time I had not been diagnosed with any conditions and despite my extreme physical reactions to tiredness, perceived myself as relatively healthy.
I remember injuring my lower back for the first time when my firstborn was in hospital for four weeks in 1988 on traction for her hips. The cots were metal then and the repetitive lifting caused my injury. There’s no record of it because her consultant gave me a heat pad for my bed, gave us a side room and told me to rest. I healed (or thought I had) before we left the hospital.
I had no idea how to manage, but with a bit of guidance from consultants, we got through it. I think like a lot of others we survived because there was no other choice.
Years later my daughter developed scoliosis that was suppressing her little lungs and had to have a rod put in place. I can’t put into words how traumatic that was for both of us…and I can’t say thank you enough to the NHS for all the help and support they provided for her. They saved her life!! She’s gone on to enjoy life with a spirit and strength that I can only look up to…and hope for.
By the time she was 11, I was used to having to fight her corner. I remember once having to fight to have a coal fire changed to gas. At the time the debate between social services and housing over who should foot the bill seemed trivial, but now I can empathise as to how that made her feel less worthy as a person.
Eventually, I was told that I would have to claim disability in order to get the heating changed. They were surprised I hadn’t claimed previously given she’s had her conditions since birth and was now 11. I still couldn’t tell you the answer other than I was just too busy getting on with things and hadn’t exactly got clued up on disability before we were thrown into the thick of it.
Later, weeks before she was due to have a major operation and we were mid build on an extension to the house for her return home I had a nervous breakdown. Despite being so grateful for the adaptations and comfort they would provide for our family I was just wiped out by the stress of it all. By this time, I’d been diagnosed with CFS (Chronic Fatigue Syndrome) and thinking back now, I feel that an advocate would have been a huge benefit to me at this time, given that I knew very little about the ins and outs of what was going on. Sadly, I had no knowledge that they existed and had no one steer me in that direction.
My own health slowly getting worse
My first bout of overwhelming fatigue was in 1995. I was pregnant with my fourth child and I felt so fatigued the GP wouldn’t leave until somebody confirmed they could take care of me until I was back on my feet. This took two weeks and was an incredibly difficult time for me as I had always been the one everyone else could depend on.
I then felt ‘normal’ for a long time and it wasn’t until I was pregnant with my youngest in 1998 that things took a further turn for the worse. I had a nightmare pregnancy and suddenly, when he was around 3 months, I just passed out. Just like when I was a child, I wasn’t aware of any warning signs from my body that I was exhausted – I would just be hyper until I dropped…and hyper felt normal for me. I always had bags of energy and I enjoyed it.
The GP told me to slow down and pace myself. He diagnosed me with vertigo, saying that if I didn’t slow down my body would do it for me. This diagnosis was based on one conversation. No tests. No investigations into potential causes. And worse, no guidance on how to possibly achieve this with 5 children who were all dependent on me. How could I possibly slow down?
On thinking I’d recovered, I went to college and started at the gym. As I got stronger I hurt my neck so had to pace myself again. I enjoyed an active social life and as the injury healed I would love going out dancing on the weekends. By now all the children were in school so I had also taken up a soft contact martial arts class, but then injured myself again. Following this, I was diagnosed with CFS (Chronic Fatigue Syndrome) and told my exercise was too vigorous. Diagnoses of arthritis and fibromyalgia swiftly followed in 2005 and I was advised gentle activities like yoga would be better.
A year later I was diagnosed with hypermobility and then DDD (Degenerative disc disease) in 2014. So, by now the list runs as:
Lots of labels. No cures.
I’ve never stopped believing that one thing is bringing this on and there is a cure or cause that we just haven’t found yet…or someone doesn’t want us to know about it!!! l believe that all these labels are just masking a root cause that could be treated if it was properly investigated and not so easily categorised as something untreatable that just has to be lived with. There are too many people with a similar number of diagnoses for this not to be the case – medicine clearly just hasn’t caught up.
I’ve had 3 long term GPS, several consultants and two years ago started with a new GP in hope of a fresh start and to get off the stream of pills I was being prescribed, firstly for the symptoms, then for the side effects caused by the pills and so on and so on!!
I didn’t get what I hoped for. The new doctor put me on an anti-inflammatory, Diazepam to help me sleep and some tablets for the bloating when I eat.
I was also given a self-propelling wheelchair as I was struggling to walk. Unfortunately, I was turned down for an electric chair because on SOME days I could walk a little further than their criteria allowed without GREAT pain. Unsurprisingly, due to my other symptoms, I couldn’t use the chair I was given because it hurt my neck too much due to damaged discs and nerves in my neck and back. What is surprising is why the GP ignored this information, especially given he’d even seen the MRI showing the pinched discs. I was struggling to walk, carry, lift, shift and do practically everything else now because of the pain it was causing so it was common sense that I was unlikely to be able to steer my own chair. What a waste of funding!
To try to find a better solution I went back to the GP, but before I could say anything he started the conversation with ‘Oh, so you can walk now then!?”
He suggested with his tone and backhanded sarcasm, that I’d been laying it on thick. There was no comprehension of the fact that sometimes I actually did feel fine and could just walk in. As my condition fluctuated, of course, I was going to see the GP when I felt at my best as at my worse I was in too much pain to leave the house. His reaction left me stunned. This felt like a complete violation of trust and damaged my confidence to try to get the help I still desperately need.
Following this visit, I just withdrew into myself. My situation felt helpless; no-one believed me, therefore, no-one would help me. For weeks it felt like everything was a fight. I reflected on when my daughter was young and wondered why it was so easy for me to get the help for her and yet when I ask for help for myself I get insulted with insinuations of faking it. Surely if I was going to fake it I’d try a little harder to ham it up – make sure I always sounded consistently bad, take the wheelchair and any other props I could think of to every appointment.
I’ve also had support through social services and CAB (Citizen’s Advice Bureau) before but I would often feel overwhelmed with new faces and that feeling …loss of control… would not allow me to accept the help for long.
Now though, I wish for family support or any other adult support to fight my corner as I increasingly find it difficult to speak for myself after being humiliated by professionals like that! How am I supposed to be able to put my life in my GPs hands again if I can’t trust him?
I did get care for a while but struggle with sleeping at night and couldn’t cope with the different faces as carers rotated. Some days I would also improve throughout the day and would get comments from the carers that perhaps I wasn’t disabled. This again reiterated that I was faking it.
The ripple of people telling me that my illness was in my head led me to question my own sanity and ask myself, was I doing this to myself?
Granted I look well…. with hypermobility I get the added bonus of youthful skin but looks can be deceiving. Outside I might look great, but inside I feel 90. However, in my opinion, any health professionals should be trained to see past superficial looks and understand how common fluctuations in conditions are, so there really is no excuse for the comments I’ve had to endure.
Adding depression to the growing list of conditions
Being disabled was not in my plan and I can’t imagine anyone ever choosing to be disabled and sit at home all day in pain, but I feel forced to at the moment. In fact, I’m becoming a bit of a recluse too. I get agoraphobic on leaving the house alone. I seem to be okay if someone’s with me but even that is getting too much when company forgets to slow down for me.
I live life in the slow lane now. All this change to my health has led to me to gradually avoid social interaction more and more. I feel like everyone wants the old me and I can’t just summon her up. The consequences as a whole have made me extremely sensitive so much so that I’ve not had Facebook for years and avoid social media as well (unless it’s straightforward and helpful of course). For me, shutting the world out for a while is becoming the “norm” and is a new-found comfort. It keeps me safe while I struggle with learning to trust again.
I ended up feeling so low that I gave up on life completely. I felt like my illness was too taxing for both me and my family and I felt like a hindrance rather than a help to them. I hit rock bottom, feeling totally unheard and invisible. With hindsight, I suspect that the Diazepam had something to do with it too.
I reluctantly booked an appointment with my GP when I was out of the hospital to discuss how I was feeling. With surprise yet still flippant as ever, on looking at my notes he said “Oh, I didn’t see that coming!’
I couldn’t even respond to tell him that as my GP he was the straw that broke the camel’s back.
I’ve avoided that GP since. In fact, I’ve begun to avoid life since. I stopped going after a few appointments with another GP within his clinic. I didn’t see the sense in going if my needs were going to be fobbed off with another pill or an operation that could be avoided. He has my records and as far as I am concerned is fully informed. I really am not strong enough mentally or physically to be demoralised anymore…I haven’t been back there for a year now. I need to go, but I feel anxious before having to go so I don’t end up going!! I’m also struggling to go to a new GP too… for now.
I’ve now been in therapy for two years following that episode and I still feel like no one can hear me or see me..like I don’t count.
Therapy helps me to manage the array of emotions, but I often feel that my therapist doesn’t really grasp how much this combination of society’s attitude toward illness/exhaustion and pain over time is destroying my will to keep trying.
The world is nothing like I hoped… Most of my friends have dropped off since I’ve slowed down and trying to find and sustain new friendships when I struggle to regulate thought processes and physical activity is near on impossible. It has left me with little will, at times, to even go on trying. Although I know this leads to further isolation it sometimes beats listening to another person give me advice on how to think more positively or advising me on things I haven’t got the capacity to sustain.
I know I can still do anything, just not without pain and I can’t maintain it and that is the crux of it. I’m wondering if self-acceptance is the key. My son thinks it is and he abruptly told me I have to stop apologising for who I am now. The thing is, I can accept that I can do things some of the time…what I can’t accept is how society responds to me not having the ability to be consistent. There is little acceptance that just because I could do something yesterday or even an hour ago doesn’t mean I can do it now.
I find that the majority of society are ignorant to invisible illness and the isolation they instil in us. I’m not sure if they don’t believe it’s a genuine illness, or they just enjoy inflicting pain, but…listening to those blatant remarks and sometimes sarcasm in order to intimidate me into being my old energetic self,… with a hope that a bit of bullying might somehow miraculously make my illness disappear really hurts …especially when coming from the people that I’m supposed to be able to trust and those I love and care about.
Not giving up hope
Despite having this illness and hitting rock bottom, I still continue to look for answers in hope that one day I’d not only get my life back and could feel connected with my children again but also play with my grandchildren.
I long to not have this blocked feeling I’ve got all the time, where I don’t feel connected to anyone at all. I’d love to babysit but can’t because I never know how long I can sustain the strength and energy for. I’ve tried to prepare for a future when I am better, acquiring qualifications in bookkeeping, massage and counselling.
Despite this, people still insinuate I’m being lazy or I’m not being positive and that infuriates me.
I can honestly say trying to be normal to make others/myself happy has been further damaging/ exhausting!
People have no idea! We’ve had some great times but there have also been the days we all struggled. The negative cycle of days when my children needed me but had to endure me while I had pain, no energy, mood swings and my brain was scrambled. Then me feeling exhausted, embarrassed and mortified when things calmed down, when I could see the total despair in their faces because they don’t know or like this person I keep switching to, and they don’t know how to fix their broken mum. All followed by countless apologies from me for not being myself which just built a lack of faith when the cycle of behaviour repeated itself. I feel gutted knowing the impact I’ve had on my family.
Now, when four have moved out in turn, I feel robbed. They still visit, but not for long because I sometimes struggle to stay connected. We all mutually avoid each other when I get bad because I don’t like being like it and they don’t like seeing it. I get a week in a month where I see my old self if I’m lucky, but just when I start thinking there’s hope, I disappear again.
I find this the hardest bit to accept…if it was one or the other I think I’d cope a lot better. I described the experience to my therapist as if I’ve been trapped in an invisible cage by an invisible thing that lets me out once a month to be me, but just as I think I’m pain free and me again it drags me back in and I’m helpless to do anything except give in to it. I can’t even fight because I don’t know how to.
Losing faith in traditional medicine
If my GPs had supported me adequately in the early stages I’d like to think I’d be more available now and employed – who knows?
Now I resent endless visits to the GP to be used as a guinea pig. I look better than I have done for a long time, and although I still get pain, and sleep is still an issue, I’ve turned to alternative remedies and it’s not as bad as when I was on meds from the GP. Some of the side effects from the GP’s prescriptions were crippling and bought on things like weak bladder, restless leg and even more cognitive intrusions…some of which have actually subsided since opting for the alternative.
When I grew out of believing that the GP knows best I wondered why they gave me endless pills. It didn’t seem logical when they didn’t know what the actual problem was and all my bloods were coming back clear.
I realised that each pill was for a singular symptom and each pill distributed was money for big pharma. I questioned whether finding a solution to my problem would actually be profitable for them or was it more profitable to keep me on a cocktail of drugs with no hope of recovery? Was I just dispensable for as long as I’d allow myself to be? It was the internet that helped me with this realisation. My response was to take back a bit of control. I turned to natural remedies and a chiropractor which I was surprised to find gave me enough strength to get out of bed again. Sadly, the recent chiropractic treatment is getting quite painful but without it, I think I’d be bed bound again so am holding on to it for now.
I did wonder what that GP was saying to other patients with chronic pain illnesses too…. was he forcing them to struggle on silently? How many of us are there in a suboptimal place because we’ve been let down by those that guard the gates to medical investigations and treatments?
My friend with fibromyalgia had a similarly bad experience with her GP who once even questioned: “Don’t you think you’ve had enough from the NHS?” She was in tears for weeks after this and is now struggling to return to get the help she needs. There was again that familiar sense of betrayal that those who are meant to be the ones we put our trust in and expose the deepest depths of what we are experiencing to are simply not interested.
I would really like something to be done about this atrocious bedside manner some GPs are getting away with. The trouble is we are forced to go back because without their support we can’t get other help we may need. It feels like an endless cycle of humiliation after a time.
To cure the boredom, I have to remind myself that not every day is like this and I’m fortunate to get some good days or hours. When I’m feeling weak I try to occupy myself with roaming on the internet. A lot of the time is spent searching for answers or ideas on how to cure my pain which has provided lots of inspirational ideas. Meditation is a godsend. Exploring pain sites that share and inspire ways forward has been a blessing as have some of the pain management sites.
I also spend a lot of time on gaming sites, listening to music or watching Netflix. I’m currently trying to learn a language on duolingo when my brain works – sometimes I’m good and sometimes I’m not so good. I’m learning skills in the hope that when a cure is found, or society is more open I’ll have a skill that hopefully doesn’t involve emotional or physical drain.
I’ve also looked at a meet me app in the past that invites people to socialise. Sometimes being in the company of strangers can be a blessing when we have things in common. I think it’s a great idea, however, when I tried it I was met with an obstacle – filling in what I do for a living. I felt worthless at this point…again with society not being empathic to invisible pain…once I say I’m unemployed there seems to be a loss in common ground and suddenly I feel less of a person, than the person who’s employed.
I have a great unmet need to be doing something and to fit into anywhere that will employ me yet allow me to work at my own pace. I would be over the moon if the employment sector would come up with a solution within this area for the disabled. One that fits a fluctuating condition and any ideas within this field will be greatly received!
The combination of pride and fears have also held me back when dating. I read some wise words on another pain site reminding me that I am still lovable despite my quirks. This helped restore a bit of my confidence/faith and willingness in wanting to date…it reminded me everyone in the human race has quirks – two able-bodied people might not match simply because one is not attracted to the other’s quirky ways…yet someone else might find that quirk is exactly what makes that person attractive to them. Being disabled does not instantly make me unattractive – it’s not loving my quirk that does that. I have to remember that it isn’t my abilities that attract a person but accepting my own quirks and looking for someone who likes them.
All this made me realise that I’ve been putting myself down for so long whilst grieving for the loss of me. I began to have a self-loathing and unrealistic perspective of what love is really all about.
Living with the judgement of others
I’m convinced that my overwhelming need to be heard and seen has come from living with an invisible chronic illness, which I believe is so misunderstood by the general public, family and friends… who I don’t hold personally responsible for their lack of knowledge or understanding, given the lack of exposure from the government, medical professionals and media before the internet gave some voice to chronic pain.
My children and siblings thought I was being lazy for the most part, given the condition fluctuates, between hyper and flagging. I can understand their confusion. The frustration of my mood swings, forgetfulness and the endless list of ailments nerve pain can bring… it’s only been recently that fibromyalgia was recognised as a real genuine disease and ME was recognised as CFS, that they’ve realised the depth of the difficulties that I’m experiencing.
At the time, their avoidance, I suspect, came from exhausting all avenues of trying to help with no hope of it ending for years to come. Even the helpful ones end up feeling hopeless because there isn’t a quick fix.
Children don’t want to switch roles and be the parent. They don’t want to understand and accept that their parent is ill. Their parent is supposed to be their rock. For a single parent in pain, this is endearing but also exhausting and has been very challenging to endure.
Grieving the loss of “self” seems complex and endless too, especially when I get glimpses of my old self as the condition fluctuates. It just seems like a tease. It’s not only difficult on the person enduring the pain, the one that suffers the hurt and loss of themselves as they were, but in turn also hurts everyone surrounding that person. They have to let go of their old sister, mum, friend, etc because that person doesn’t exist anymore.
Up until I joined a few pain sites online and a fibromyalgia group I had never realised how big the numbers were in relation to people having to suffer in silence. It brought comfort in knowing I wasn’t alone, but I’m still left with the knowledge that we’re all suffering unnecessarily. I feel compelled to do something. To help make some sort of change happen even if it is small…. lots of small changes make for a huge change in the future.
During a harvest assembly in infant school I learned that “just being there” really helps the elderly, and I remembered it…I think it also helps for long term chronic pain!
Getting society to change
I learned that cancer can be very complex, varying from benign to a terminal illness. It has huge possible treatment avenues and still requires funding in order to explore new, more effective treatments. The work that’s being done is wonderful. I learnt all about it through many fantastic fundraisers that are given huge media coverage and exposure on the TV, radio and the net which is a true inspiration.
I also love how light has been shed on disability through the Paralympics. That is huge!!! I think it’s an encouraging reflection of what could be possible if it were to be applied to raising awareness for chronic pain for the rest of us who do not have an Olympic capacity but would like to be able contribute something, at our own pace, in the hopeful and near future.
On a few occasions, I’ve felt insulted when being told I’m looking for an ideal world. However, its right that we strive for the changes we want to see. In an ideal world I believe education from young could play a key role in enabling aspiring MPs, GPS, media reporters, teachers, families, people in all walks of life, to be better prepared and informed on the suffering and lack of support a family can endure when a family member gets sick. It could help with establishing the different needs between short-term illness and long-term chronic pain. We might be able to emotionally prepare our families better for the changes life can often throw at them, their neighbours, their friends and their relatives.
Illness happens in the majority of homes and yet we know so little on how to be prepared for it/cope with it in the moment. If we were all taught how to accept change and illness as a normality – through play in nurseries and social studies in schools, through media and TV – sharing our stories of what helps and doesn’t we’d all be learning how to adapt and overcome and help.
In the early stages, I personally feel it could save a lot of families suffering through those unbearable self-persecuting thought processes and insecurities that lead to such isolation. Instead, it would be replaced with acceptance and the assurance that families don’t always have to be pulled apart. Acknowledgement that we are all still important, and we are all valuable members of society, regardless of our abilities and I welcome any ideas on how we can make an idealistic view a reality in society because I feel there’s a real need for it.