Supportive Support

What the f*ck am I going on about? Supportive Support??

The title is catchy and crap at the same time. A bit like me. But despite this there is an idea, or maybe just an opinion 😜, behind all this.

This post is dedicated to our collective need for genuinely supportive support. Therapists, counsellors, helpline staff, crisis teams, nurses, mental health specialists, GP’s, receptionists. The list goes on. These people are the ones providing the PROFESSIONAL support to help us get back on our feet. To get us back to our best selves. To raise us back up.

But these days I can see a problem with professional support not being as ‘supportive’ as I might have hoped.

It’s not everyone. Not at all. I’d say 98% of my interactions with care givers has been positive. The problem is the remaining 2%. They are sadly the ones that leave a lasting impression, have a detrimental effect and have the ability to inadvertintly make a bad situation even worse.

I don’t think they even realise they’re doing it.

Other than titles, I promise to try and remove the use of the word ‘support’ and all of its variations in this post from now on.

It’s repetitive, I know.

What do I mean by ‘support’?

It’s everywhere. We’re all trying to help each other one way or another. Taking your nan swimming, making brownies for your friendly neighbour, chatting to a pal in need, liking a social media post, recommending a new restaurant. We’re offering leg-ups all over the place. Putting someone else in a better position than before they had our input. It’s helpful, it’s valuable, it’s worthwhile, it’s kind, it’s selfless…

Well, it should be.

When I give the leg-up I mentioned, I do so with kindness, love, care and gratitude.

Why are there professionals who don’t do the same?

Within the community, the assistance that we provide each other is actually easier to tap in to than the professional variety that patients are desperate for. We all need help at times. Friends and family might not have the key to get you back on track. To get out of a blocker. And this ‘blocker’ can be physical, mental or both.

Professional help comes in thousands of forms. For example, in 40 years I’ve received professional intervention from GPs, midwives, doctors, specialists, gynaecologists, physiotherapists, volunteers, chronic pain team, midwives, councillors, therapists, dentists, orthodontists, crisis team, sonographers, psychotherapists, health advisors, nurses, care coordinators, district nurses, and of course, support workers (that one doesn’t count!).

If you’ve ever been a patient, for any reason, then you’ll understand how vital it is to get pro assistance in order to achieve successful rehabilitation and recovery. You’ll probably also understand that this kind of assistance isn’t always easy to grab and doesn’t always SEEM to help the way you hoped.

It’s a fair comment. Help for patients with both mental and physical limitations is becoming harder to find and engage with. In the UK, if you’re lucky enough to be referred to the right place, liklihood is that you’ll be in for a long wait. I’m on two wait lists at present. The first I’m told will keep me anxious for over a year and the other will be closer to 2.

In my 8 years juggling my mental health limitations I’ve probably had 10 or 11 professional MH advocates. And I think I’ve been lucky. Some of them were incredible, some of them were awful.Some of them helped, some of them didn’t know what to say. Some of them seemed to genuinely care, some of them seemed to just want me off the phone. I’ve said before many times that for me, anyone offering me care needs to understand my life, listen to what I say and take in how important my most valued people are to me. That’s the fasttrack route to my heart. Listen, Learn and (if you have to) Lie.

There are few things worse than meeting a new professional only to be immediately asked to “Start from the top please”. Erm, let me think…NO! Some of the information you WANT to hear about me will need to be earned. You want me to trust you with my hyper-private information? The level of trust that requires has left me unable to tell ANYONE about the worst moments of my life. How can I pour that out to a stranger?

This means that ultimately the trust is either earned or it isn’t and the level of care i’ll receive will alter depending on how much I feel comfortable revealing. Thinking about it, this situation applies to my physical challenges just as much as the ‘mentals’.

Sadly, it seems unlikely you’ll get the help needed if you operate the way I do.

In order to get the right type of backing I realise I’ll have to swallow my pride and engage, even if it’s a struggle. I have to find a way to get the symptoms, pain and / or mental struggle across. In my experience, giving up on the help that’s offered because of frustration with people, frustration with wait lists, frustration with the system and/or fear of the truth I’ll need to reveal, will just delay getting the right help in the long run. The problem itself won’t go away and I’ll go straight to the back of the ‘needy queue’.

Ergo – we all need supportive support to move forward. But supportive supporters can be elusive…

Unsupportive Support

It really exists…

I’ve had so many let downs during my care that I’ve given up and thrown my toys out of the pram more times than my partner farts (yes, it’s a lot 😷😷). A few examples of the major let-downs in the last 8 years include;

  • Being refused a referral for help with managing bed sores. Administrative staff refused to believe I had bed sores because I’m only 40 (cheers) and said I therefore wasn’t eligable for help. Being stuck on the bed all day every day meant I genuinely did have them late last year. It was incredibly painful and embarrassing enough, without someone refusing me the help I needed for reasons I still don’t understand. This caused me unnecessary and avoidable anguish, shame and (worst of all) prolonged my pain.
  • Having appointments forgotten – one specific appointment with myself and several other parties was arranged to review my care plan. One of the teams failed to arrive despite me confirming with them multiple times. That led to a panic attack like I’ve never had before and was the trigger for the Tourettes I’m living with today. I’ve never even had an apology.
  • And (My personal favourite) being told to “Pull yourself together” when trying to explain my agoraphobia to a nurse visiting me for urgent blood work at home. I’m fully aware that my situation is odd, but that doesn’t mean I’m lying, It’s horrible and it’s not a choice. To have a professional be so unsupportive, especially within my designated ‘safe-space’, was fu*king disgusting.

These examples are all ‘Unsupportive Support’.

The more it happens, the more you realise it’s not always the people at fault. It’s often the system itself that might be flawed.

Supportive Support

Here’s the twist. All of the avoidable scenarios I mentioned above were turned around by people who really did care.

For the bed sores I had to do some digging, but after researching I found the details for the District Nurse and called them directly. When I explained I’d been refused help but I had painful open sores and didn’t know what to do, they gave me an instant referral and a nurse visited the next day. She looked after me for a month or so until the sores become managable. Why this help was originally refused neither they nor I could understand. Nonetheless I was left with real confidence and trust in some incredibly selfless nurses who were visiting people in the community all day and night, with a friendly smile, come rain or shine.

For the meeting at my home I had to complete a complaint with patient liaison, but it was so long winded, so complicated, that I gave up and they heard nothing more about it. I’m still frustrated by that series of events today, but I haven’t got the energy or confidence to argue with a service that simply doesn’t care. However, gladly, it did lead me to an incredibly helpful rehab worker, who literally cradled me after that nightmare and helped me heal from it, forget and move on (temporarily at least). More on her later.

After being told to ‘pull myself together’ I spent a few days back in ‘The Dark Pit’. It was a throwaway comment that the nurse probably didn’t think would cause an issue, but it did. I was lucky to find a helpline to talk it out with. I’ve used them a few times since and thet’ve provided several helpful ideas, insights and comments. Sadly the nurse is unlikely to find out how upset I was, specifically to be accosted in my designated safe space. The advisors at the mental health line helped me realise that this specific nurse has a lack of understanding and might need some training. The problem (mostly?!) isn’t me.

Once I realised not everyone was working against me and it’s the system that needs attention, it became easier to engage with new people. But if I’m honest, I need to work on my ability to trust people who’ve earned it and be less guarded.

The Ultimate Support

But last year, 2021, was a game changing year for my heart and soul. It was, by some distance, my worst MH year so far. My agoraphobia advanced, most nights were 100% sleepless, I spent many days and nights in tears, I felt helpless, I felt alone. But I was offered a referral that, at first, I was reluctant to accept. I had no faith in the people nor the system as a whole. Then they explained the process and the rehabilition work that would be completed and I felt like I had to give it a shot.

When I think about the assistance that I ended up with, I can’t help but smile. I won’t be specific because there’s every chance this may be found, but there was one superb and kind lady involved in my care that was 100% everything I needed at that moment in time. Her sympathy, her listening, her interest…she even seemed proud of me when I started having little wins between the pain. She was my first champion. I was gutted when we parted company. I think it was Feargal Sharkey who said “A good heart these days is hard to find”. He’s right. As rare as a 10 carat diamond. But I found one.

It would be easy to look at the 4 months I had with her and decide I achieved nothing, because she was specifically assigned to help with my Agoraphobia, and I ended up more indoors than ever. It’s been 9 months and counting. However the gift she gave me, more important than anything else i’ve ever been given, was belief.

Even though she’s now gone, that belief continues to help me. She probably doesn’t realise how seriously I took her input and comments and how much I valued her time. I sometimes find myself wondering silently if I was a respectful and friendly patient? Did she really care or was she just super good with notes? I guess it doesn’t really matter, she still left me with a lasting impression. She left me with a smidge of relief AND belief. Belief some people care, belief there is help, belief I can improve and belief that not everyone wants me gone.

Unfortunately it just seems to be hard to find this quality of help. But I’m living proof that it exists. It really is out there.

I’m not naive, I know theres every possibility that before every conversation or visit to my home she took 10 minutes to read my file and recall all the important information about my case. It still doesn’t matter. All I care about is when she showed up / when she called / when we had a video call, she knew the basics about my life. She made me feel like the most important person in that moment. She knew the things that were important. What I had planned, the health of my family, my creative progress, my dreams, my struggles, my pain. She remembered them all and it meant everything. Being so organised and being so helpful and honest she made it easy to build trust and as a result I could speak freely. I wasn’t worried about the burden of having to repeat myself or feeling like I’m not understood. It was ok to be my vulnerable-self around her. I didn’t need a fake facade. She was ace. And I’m still struggling without her help. I find her absence hard to talk about.

Having such positive care experiences with her gave me enough clarity to reflect, retrospectively, on how MY support has left others feeling. Having input from someone who knows how to help a patient carefully and with respect helped me see how I could have done more in the past. I may have helped or hindered someone who needed my help. Did I do a good job? Was my advice helpful? Was my input thoughtful and considered? Did I say the wrong thing? Have I unknowingly caused someone to be upset? Causing unknowing hurt is something I talk about in detail in my blog post ‘Rejection and the fear of rejection’, and it’s a common theme in my life.

Where do I find supportive support?

It’s everywhere. There are people caring across the country, day and night. Although sometimes finding it is an exercise in trying as hard and as often as possible. Ask people you already rely on. Family, your GP, teachers, mentors, friends. Then theres the organisations specifically designed to signpost you to the right place, including helplines, chat rooms, forums, websites, articles, magazines. The list goes on.

If you don’t feel up to doing the research yourself then ask someone to help you find it. Even your GP might be able to point you in the right direction. The help is out there, sometimes you just need a hand finding it. I certainly did.

My Brains page has several helplines and message services specifically aimed at people struggling with mental health.

In conclusion…

I know that in the past I’ve been both a good and bad supporter, but this help has always been at a friendship or relationship level. When we need ‘support’ from a PROFESSIONAL the parameters are instantly changed and that support should ALWAYS be carefully considered. Words should be thought through. Advice should be researched and based on facts. The amount of time given should be appropriate.

It’s taken me months to write this post because I’m still incredibly sad after losing a support worker who really understood me and earned my trust better than anyone else in 8 years. Losing her was awful. She was the ultimate Supportive Supporter. If she ever reads this I hope she’ll know who she is 😊 – and if you are here reading this, thank you.

I’m hopeful that the belief I told her I craved and the belief I’m slowly getting back will continue to grow. I’m not fixed, not by a long way, but her input helped me believe that one day I might be.

It took me 8 years to find her. So my advice is to keep trying, do the research, ask for help, make the call.

The sooner you do, the sooner you’ll be tapping in to ‘supportive support’.

Finally, as always,…

The Accompanying Picture

My creative mind and my imagination are totally out of sync at the moment, which made it nigh-on impossible to come up with a great picture for the post. So back I trudged to brother Google to find ANYTHING that might fit the bill and be a clear representation of ‘support’.

You’ll be unsurprised that, once again, I have come up with a picture that links to the post in the most tenuous way possible, but (in my head) it still works.

Basically, what this picture is trying to say is, in the 8 years i’ve been banging on doors (figuratively), researching, and talking, the only thing that made a tangible, long-term difference was the medication I was prescribed. It took some juggling and fiddling, ups and downs, different doses and changing the time it is taken…basically trial and error. These changes and tweaks are still regularly reviewed today. But I’ve been using medication for both Mental Health and physical pain for years and it’s supported me throughout. Having the meds right makes it easier to find the human support needed. It’s another important piece of the support puzzle.

I’m left feeling the same way about meds as I felt when my ‘Ultimate Supportive Supporter’ left. Wondering what I’d do without them. Wondering how they work their magic to make me feel better. Feeling fractured by the idea of not having them in my life any more.

Meds are a great thing. Mine have probably saved my life multiple times. But nothing beats talking to someone who not only knows the importance of their role in your care, understands how they might be able to help, guides you on your scary mental or physical health journey, wants to earn your trust, and finally makes it easy to do all these things.

Thank you NHS, thank you carers, thank you supporters. ❤❤

Published by stephc2021

Hi! I'm Steph, an amateur writer and illustrator specialising in Mental Health and being a self-confessed Spoonie. My website is home to any successful fiction I create, with stories that have won so far covering difficult subjects such as baby loss and mental health in grief as well as some funny and heart-warming tales when I get the inspiration. Every drawing and picture on my website was created by me. I spend a lot of time coming up with illustrations to accompany all of my posts and pages. I try to create original content across all of my channels, whether I'm writing about my own fiction or just generally musing on mental health or my own issues. I want to be part of the change because I believe the understanding of MH in the UK is getting better, but has a very long way to go. By being honest about my own struggles and symptoms I think others will relate and hopefully it will encourage them to talk to someone and get the help and support they need. Long term my goal is to help children too, help them understand their own mental health and how to help with the mental health of those around them. I live in the UK with my partner, daughter and dog, I swear frequently and I adore a well made, traditional, gooey, chocolatey, delicious brownie.

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