Interview with Rachael Carter – founder of Back2Back Support Group
At the last Back Pain Show I met Rachael Carter. She is a 33 year old who has had major spinal surgery and is currently unable to return to her marketing role due to the long hours, job inflexibility and the fact that her bad back does not allow her to work at a desk for any length of time.
Rachael is not the sort of person to do nothing though and until she can start work again she has started a chronic back pain sufferers support group and also volunteers at her local hospice.
She was good enough to answer some questions about her support group Back2Back.
Back2Back caters to younger people. Why is that?
Spinal surgery due to chronic back pain in the under 45s is rare. It is a common surgery for those in later life. This means that consultants are used to dealing with the older generation and there is lots of emotional support out there for those patients. Also, when you are younger, whilst you have the advantage of youth the recovery from the surgery is quicker, emotionally it is much harder as we tend to slow down in life as we get older so you do not feel as debilitated. When you are younger and working 50-60 hours a week, socialising, running around bringing up young children etc. the impact of living with such chronic pain or following surgery can be extremely emotional as there are so many things you find a struggle.
Below is an example of a FEW things I have had to give up or dramatically change to my condition:
- Socialising in bars & clubs (only if I know the environment is comfortable so I go out rarely now)
- Dancing (in clubs, at weddings and birthday parties etc…)
- Cleaning the house (I cannot hoover or mop floors, clean a bath or toilet etc…)
- Intimate relations with my fiancé (this had a huge impact on our relationship)
- Travelling alone to places I am not familiar with
- Wearing heels or fashionable shoes
- Netball (I used to play national netball then had to slow down due to my condition and played regional netball. Now I can’t play at all)
- Zumba and aerobics
- Driving/travelling long distances alone
- Travelling in rush hour or in traffic if driving (this would be different if I had an automatic car, but I don’t)
- My ability to get washed, dressed and styled at a ‘normal’ pace
- More importantly, I am deciding whether or not I can cope with the idea of conceiving, carrying and caring for children…
As a sufferer yourself why does talking with others with similar problems help?
I have suffered since I was 17 years old. Throughout the years I have tried to keep picking myself up and carrying on, however, in 2011 I hit a point of no return and had numerous procedures until surgery was the only option. I have never felt so alone – especially as the only other people I knew who suffered with debilitating chronic back pain were 60+. As chronic back pain is invisible, many people are quick to judge and don’t understand how hard it is to live a normal life. Especially if you can walk ok (I make sure I do some low impact exercise every day and physio for this reason!). It is so nice to meet others close to your age with similar lives who understand you completely. It’s nice not to have to explain why you have to get up and walk around or fidget, why you can’t bend to pick something up, why you can’t undo your shoes standing up etc… It’s also important to learn from each other and gain useful tips on how to cope with different situations.
Do you find that your back pain is taken seriously as you are so young?
It’s a double edged sword. There are Doctors and Consultants out there who dismiss you before they have even checked you over or taken a scan, as they are not used to seeing ‘young’ patients with such chronic back/spinal problems. Some Doctors have even told me it’s all in my head (this was pre-surgery)! However, on the other side, if someone does find out I have had such major surgery at my age, they are extremely supportive and even shocked.
Do you have any tips on everyday life coping strategies for younger people with back issues?
I cannot stress the importance of low impact exercise (walking, swimming, cycling, pilates etc…) every day to keep your body moving and to strengthen the muscles (Doctor allowing of course).
Physio is fantastic – especially core stability work – but it must also be done by yourself at home as per your physio’s recommendations or there is no point.
Stress does not like chronic back pain, so learning to remove yourself from stressful situations where possible, and using relaxation techniques are also great learnings.
If you are physically able, I would recommend finding a ‘distraction technique’. This is usually something creative like baking, painting, drawing etc.. it should give you a bit of a rest from the pain or stressful surroundings for a moment.
Speaking to your close friends and family about how difficult you find socialising when your pain levels are too high. You would be surprised how they can rally round and help make your life more comfortable – even if that’s just a case of them coming over to you with food and to catch up so you don’t feel so isolated.
How do you find attitudes of employees to younger people with back pain?
I do think it depends on your employer so this is a hard question to respond to. I do know of others who have not had support and it made their situation extremely stressful. As chronic back pain is invisible I do hear of people who have to prove how ill they are to their employers as they do not believe them. However, on the flip side, there are also employees who take advantage of such an invisible disability to have time off so it does swing both ways which doesn’t help people with genuine chronic back pain.
I was quite fortunate to have permanent health insurance included in my work package so whilst I was off, my employer was considerably supportive as they had no costs to support me. However, I have been told I can only work part time and my employer has just terminated my contract as they could not make reasonable adjustments to allow me to return part time. This means I am now unemployed and looking for part time work (which is scarce) whilst trying to cope with my pain and adjustment to a new life.
Do you have tips to others for negotiating the NHS and getting the best out of it?
You know your own body. You genuinely know if something is wrong. Keep communicating with them to try and find out what is causing the pain as there are too many Doctors handing out painkillers instead of finding the root cause.
I have noticed that you are a very positive person. Do you need to work at this and how do you do it?
Thank you – that means a lot as I do have to work really hard to stay positive.
Don’t be fooled though – I have been through some really dark times over the past 2 years fighting such pain and then the adjustment of a new life and mourning my old one. However, I have been extremely fortunate to have had 12 months of therapy where I have been taught how to focus on the positives in my life and not dwell on negative things that I cannot change.
I also attended a 6 week NHS course in my local area called The Expert Patient. This course teaches those with chronic illnesses how to manage their days. It teaches how to be positive – you even get a course book. Again, although I was the youngest in the group by about 40 years, don’t be put off by going if you think it may help. I ended up having a lot of fun with the group.
My business is supplying items to help with the practical issues of having a bad back. In an ideal world what would you be useful to you?
So many things I can’t even begin to list them all, but here are a few:
- Chairs (like the Back App)
- Special stand up/ sit desks
- Hoover, sweepers… that mean I can actually clean my floors!
- Special bags/suitcases
- a bra that heats up when your thoracic spine goes into spasm to provide a little comfort from the pain
How can people get in touch to benefit from the Back2Back support group?
Back2Back support is currently based in Staffordshire and West Midlands, but will support anyone, anywhere.
Contact Rachael on 07950 813393, follow us on Twitter (_Back2Back), or ‘Like’ our Facebook page (Back2Back Support) for more details on how Back2Back can help you.