Living With a Disability

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It’s hard enough being a teenager without having to deal with a debilitating disability like Postural Orthostatic Tachycardia Syndrome (POTS).

Eighteen year-old Sophie Hicks found out she had POTS – a disorder characterised by the body’s inability to make the necessary adjustments to counteract gravity when standing up – two years ago. She tells nzgirl about the disability and how it has affected her everyday life…

“You’re forced to grow up so fast yet you’re so dependent on people to care for you and help you. I am beginning to accept what I have now, and with acceptance I feel stronger although it still hurts to watch people live so freely.”

How did you find out you had POTS?
Well I’ve been sick for over 2 years now. But before that I was doing a lot of fainting etc. I’ve been through pretty much every test in the book-CT Scans, MRIs, gastroscopies (camera into your stomach), x-rays, ECG’s (heart scans), EEG’s (brain scan), video EEG monitoring, ultrasound’s, numerous blood tests, an oesophageal minometry (tube into your nose, throat and then stomach), a tilt table test, a treadmill heart tests, a 24 hour heart rate(holten) monitor, etc. We had look at numerous possible things – at one stage it was thought the chest pain I have was stomach orientated but that wasn’t the case. Finally, just recently, I was given the diagnosis of POTS from a positive tilt table test (where they induce fainting) as well as my low blood pressure readings and tachycardia.

What effect has it had on you physically?
Physically, some days I can’t walk and am stuck in bed. I get chest pain that knocks me unconscious, numbness in my limbs, extreme joint pain, tachycardia, tingliness, nausea, diarrhoea and stomach cramping, headaches, etc. I have low concentration levels now and get bad fatigue. These all occur every day. Some days are better then other days, but everyday there is something.

The pain is severe; it’s all over me every day. It hurts to walk, it hurts to cry, it hurts to get changed, and it hurts to roll over in bed. It’s incredible. It is so hard to function and live with that pain. Thankfully now I have some new drugs and painkillers that let me live a little, they help dull the pain by blocking the pain signals sent to my brain. They can make me a bit woozy, but the side effects are nothing compared to the amazing relief they give me.

Can it be treated?
It can be treated, yes but there is no cure. There are some drug treatments which are used to raise blood pressure and blood volume and drug treatments like beta blockers for tachycardia but you have to be very careful with them. There are also non-drug treatments such as lying down after meals and working your leg muscles which both stop blood pooling which can cause fainting or stomach problems.

What are the biggest changes you’ve had to make to your life?
Everything! I have to plan so much. When we go to my doctor or to see specialists or go to the hospital, we have a bunch of stuff we always have to take. I can never run out the door anymore. I take about 10 different drugs with me everywhere I go, along with food, my medical details and medic-alert bracelet, something warm to put on (in case my blood pressure and body temperature drops) and a cellphone. I guess one of the biggest changes I’ve had to deal with is learning how to cope on a day to day basis and to cope with people who don’t understand what I deal with, and who don’t want to understand.

How do you keep yourself motivated?
I think about what I’ve achieved that day – like finishing a uni assignment or some physical therapy and know I’ve controlled my body for once which makes me feel good. I get motivated by others as well, my Mum and Dad always tell me how proud they are of me and so do my friends. My biggest motivation is the statistics about POTS. They’re not very good, it can stay with you along time and relapse but I’m determined to beat it, and get my life back on track. And I will.

Describe a typical day for you…
I wake up at around 10-11am usually; my body needs a lot of sleep. In the mornings I can barely walk, so I sit in bed and eat breakfast and take my pills until I can get up. Then it’s onto the computer for awhile to do some uni work or to work on my website. Lunch if I can manage it, and then some physical therapy. Sometimes I’ll go for a drive with my Mum somewhere (Mum’s left work to look after me as I can’t be alone when I go unconscious etc) which is great because it gets me out of the house. When we get home I’ll read, or go on the computer and write emails, talk to my family and friends, or take a nap or whatever. I usually have a shower in the afternoon as the heat wears me out and makes me faint. Then it’s dinner, medications, and if
I’m doing okay a couple of times a week I’ll go to my boyfriends house, or have some visitors. Some days I have doctor’s appointments which are a physical and mental drain. On really good days I’ll still be in pain but I’ll try and go out and do something normal-like shopping or seeing a movie or going to the beach in summer.

How do you keep yourself occupied?
Well it gets really boring, and having limited concentration doesn’t help either! I try and do lots of little things-talk to friends and DYNA members, manage my website, make jewellery, do uni work etc. I read books when I can. I talk on the phone quite a lot, technology is a blessing. I have to exercise for at least 30 minutes a day so I don’t get deconditioned. I listen to a lot of music. The effort involved in everything can be horrendous though sometimes. Going downstairs to brush my teeth can sometimes be a mission.

What do you miss being able to do the most?
I miss going to uni. It’s awesome to be able to learn and have the social aspect of it as well; people who complain about uni don’t know how lucky they are. I miss my freedom too, being able to go out and do anything.
Mostly I miss living with no pain. People don’t realise how lucky they are to climb out of bed feeling no pain anywhere. Pain is so debilitating.

Have there been any positives that have come out of this?
I’ve learnt a lot with my illness. I have always loved my family but now realise what an absolute blessing they are. They are my everything, they are amazing. I’ve learnt who my true friends are too. Mostly I’ve learnt about myself-I know I appreciate things so much more and have truly grown.

Are there many other POTS sufferers in NZ?
Not that I know of, there is no specialist for it either, which doesn’t help.

What sort of support network is there for people with the disability?
There is a group called DYNA which stands for Dysautonomia Youth Network of America (although they take people from other countries too). They have a youth computer connection program, where you can talk to other people with conditions like mine online. Whenever I want I can go online and talk to all my DYNA friends. We talk how we’re going with doctors, school and uni, treatments, how we can promote awareness of these type of conditions, just life in general really. DYNA does awesome work. DYNA educates people and doctors about dysautomonomia and has a postal outreach program (for those who are too sick to use computers). They empower us, motivate us and inspire us. The president of DYNA, Debbie Dominelli, spends hours and hours of her own unpaid time each week, to help the hundreds of us who are part of the organisation. The website is if you want more information.

How have your friends coped with your illness?
Some of them not as well as I’d like. But I know it is so hard to understand, and it is so hard to know what to do. I’m always open to questions about my illness but when someone says something like: “How come you don’t go to uni etc if I saw you out shopping last weekend” it’s hard not to scream. The rare times I can go out without too much pain or worry I want to enjoy, not be bombarded with questions afterwards. But I have found out who my true friends are and they have been the best. I also have a wonderful boyfriend who has stood by me the whole way and understands how hard it is for me.

What is your future prognosis like?
Researchers believe they are about 50 years away from a reliable drug to help or cure POTS. Some people have gotten better almost magically it seems. Some people live with it for years and years, and other people are luckier. Sometimes you can go into what’s called remission where it goes away for awhile, but it can relapse at any time. It seems to improve with summer because the atmospheric pressure is usually higher which makes your blood pressure better. I always find I feel better in summer-I’m not in so much pain. Bring on summer!

Is there anything you can do (diet, medication etc…) to improve your condition?
Medication can help, but you have to be very careful about what you take. Most POTS sufferers have a hypersensitive body, so putting all sorts of drugs in, can make things considerably worse. I take a drug called midodrine three times a day, as well as various other drugs like painkillers, anti-nausea pills etc. I wear ankle weights sometimes as they help blood pooling problems. Exercise does help by vaconstricting, so I am keeping that up when I can. Avoiding certain things such as alcohol, eating large meals, flying, giving blood, getting fatigued, lifting heavy objects and stress is essential where possible too. If I do anything I always do it in the afternoon, because in the morning I barely function.

What’s the hardest thing you’ve had to deal with?
The hardest thing I’ve had to deal with (apart from the severe pain) is ignorance…ignorance from doctors, from friends, from lots of people. They don’t understand why when they do see me I look generally well (unless of course I’ve passed out or am not walking). Invisible illnesses are so hard, people think you’re just making it up or aren’t feeling as bad as you say. Sometimes you wish it was some sort of disease so then people would go “Oh I know what you’ve got, that must be hard.” Instead of “Wow, you look well, you obviously feel great today.” There are so many invisible illnesses like arthritis and multiple sclerosis and the truth is, most chronic conditions cannot be seen. Never judge someone untill you know them.

When you’re ill, people think of you as “the girl with the illness” or “the sick girl,” you lose your identity to it. People think that’s all you are, but it’s not. I still have dreams and goals and hopes like everyone else and plan to achieve them. I may have grown and changed from it, but I am still me, the same person I was to begin with, just with some additions.

There are hundreds of people out there with disabilities, some you can see, and others you can’t. I thank everyone reading this, because the more knowledge you have of disability and illness, the less people have to suffer with ignorance.

I’d love to hear from anyone wanting to know more, or going through a disability, or wanting someone to talk to.

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