Lymphoedema is part of who I am!
By Lindsey
In 1999, when I was 19 years old and in my second year of university, I remember standing in the living room saying to my housemates, ‘Do my legs look swollen to you?’ They agreed they did look a little swollen but we didn’t know why so left it there. A few months later I moved to Reading to carry out my placement year for my 3rd year of university. This meant for the first time I had a ‘proper’ office job. I very much enjoyed my job and was learning lots of new exciting things, however, there was something which appeared to be bothering me during the day at work and that was my legs. I asked the women in my office for their advice and they said it could be because I was sitting down all day or water retention.
As a perk of the job the company hired a reflexologist to come in for the day so we could all have some treat¬ment. As I had never had this before I signed up for a session. The lady worked her magic on my feet and at the end asked if I had trouble with the circulation in my legs? I said no not that I was aware of as I didn’t put two and two together about suffering from swollen legs. The lady said that I should keep an eye on it as she had struggled to get my feet to warm up and could feel something wasn’t quite right. I just thought, ‘oh yeah I bet this reflexology lark is all a myth!’ I couldn’t have been more wrong!
So, for the rest of my placement year I struggled with my legs at work. They were fine when I woke up but as the day went on and I sat at my desk they became heavier, more swollen and painful. By the time I got home my legs were really hard. In the evening I used to sit on the floor and elevate my legs on the sofa as this felt like it relieved the pressure for me and it was as if I could feel all the fluid flow back down my leg to where it was supposed to be.
When I returned home for a visit my mam and dad agreed this wasn’t normal so off to the doctors we went. I was fortunate in the fact that my GP diagnosed my con¬dition, in a very matter of fact way: I had lymphoedema. Surprisingly they didn’t offer me any support or treatment. And when we asked why I had this condition and what could be done we were told that I was either born with it, had a tumour or had an infection which caused it. She said there was no cure for the condition and that was that! So when we got home, feeling confused and upset we started researching on the Internet – all that stuck in my head was the reference to the tumour... did that mean I had one?!
So we decided to get a second opinion from another GP. The second GP was very sympathetic and agreed with what the first GP had diagnosed but couldn’t refer me anywhere as I wasn’t her patient. So I wrote a letter to the first GP explaining my concern over the tumour and how I didn’t know what to do. We went back to see her and I wanted to know if there were any tests I could have and how was I supposed to live with this condition – the images we had found on the Internet were worst-case scenario and did that mean that was what my future held? She said she would refer me to our local lymphoedema clinic but didn’t see the point in having any tests as she was convinced at what my condition was. However the waiting list for my local clinic was nine months! How could I wait that long with all these questions and worries in my head? My parents paid for a private appointment and I saw a lymphoedema consultant. He allowed me to have the tests as an NHS patient and I was put on the waiting list.
In the meantime, my friend’s boyfriend was studying to be a doctor at university and he had just written a report about lymphoedema so she gave it to me so I could learn more about the condition.
After I had all the necessary tests to diagnose the con¬dition I went to see the consultant for the results. He said all the results came back normal which confused me even more. He said that sometimes if they came back normal then that also meant you had lymphoedema... that just didn’t make any sense to me! Then he had the cheek to say ‘Well I don’t know what else to say, your tests are normal and sometimes people just have chubby ankles’! I was shocked that the one man who I thought was on my side and knew what my condition was, dismissed me in one sentence and made me feel like a fake!
Luckily for me, my appointment with the lymphoedema clinic came up and I went for my first appoint¬ment. What a saviour St. Oswald’s Hospice is! The nurses there were very supportive, sympathetic and took the time to explain things to me. I was fitted with my first set of stockings. They were knee-length stockings and a horrendous beige colour. I started wearing them and they were very itchy! My knees started to swell so I was then fitted with full-length stockings; these were even itchier! Not to mention made me feel unattractive and totally different to every¬one else. I had returned back to my fourth year at uni by this time and it was a very stressful time with lots of work as well as coming to terms with my condition.
I was now 21 years old and had to wear these horrendous stockings for the rest of my life. I felt so alone as no-one knew how I felt and when I tried to talk about it, it sounded like I was being vain. I would never be able to wear skirts again, I felt frumpy and unattractive, would I ever met anyone? What happens if the condition gets worse? Would I be able to have children? Although people tried to understand I did hear a few times ‘well it could be worse, at least you don’t have a terminal illness.’ Which is true and of course I was grateful for that but being a young female, body image seemed to outweigh how worse off others were....this was my life and my problem seemed the biggest thing to me.
I kept up my appointments at St. Oswald’s and the nurses were still great but there never seemed to be any time to talk about how this was affecting me emotionally. I went to our local support network group but I was disheartened by this as all the members were a lot older than me so this made me feel even more alone; like I was the only young person in the world who had the condition!
I rebelled against wearing my stockings and only wore them for work, taking them off as soon as I got home and not wearing them at weekends. I was only hurting myself and causing myself pain but I just wanted to be like everyone else my age.
The years went by and I started to come to terms with it a bit more. Then out of the blue I met someone. We went on a few dates and I didn’t wear my stockings as these made me feel unattractive but then I thought ‘if this is going to work I need to tell him’. So I plucked up the courage and told him about my condition and that I needed to wear stockings everyday. He looked at me and said ‘so what, it doesn’t bother me. I like you for who you are and that is all of you’. I couldn’t believe what I was hearing! Well if he wasn’t bothered then why was I? He made me realise that it was just a part of who I am and I should just accept it instead of fighting it. He also told me I had to wear my stockings all the time as he didn’t want me to be in pain especially if I wasn’t wearing them just around him. So I started to wear my stockings all the time and my goodness what a relief! My legs didn’t hurt as much and felt really supported.
I then started getting complimentary therapy from St. Oswald’s and this was such a blessing, not only did it help with my condition but Dyane listened to all my thoughts and emotions, so I was able to get all my concerns off my chest without being judged or being told ‘it could be worse.’ I then also paid for reflexology and again Sally was amazing and she helped balance out all of my body.
I am pleased to say that Richie and I got married in November 2009. He has a daughter who when I first met her asked a lot of questions about my stockings and why I had to wear them. She even commented on how she had never seen me in a skirt! But now she too just accepts that I have the condition and putting my stockings on in the morning is just part of my daily routine and it is just part of who I am.
In September 2007 I was reading Lymphline magazine and there was a letter from a 26-year old girl who had primary lymphoedema and wanted to speak to someone her own age. This took me back to how alone I used to feel and wished there was someone my age I could talk too. This inspired me to set up a group on Facebook to try and bring together all young people who suffer from the condition to talk about their experiences, concerns or just to meet people in a similar situation as them. Any age is welcome to join if they want to. All you need to do is visit Facebook and join my group which is called ‘Lymphoedema is part of who I am’.
I am so pleased to say that over the years my group has gathered members of all ages from all over the world and it now has over 800 members who suffer from lymphoedema. We all share our experiences and chat about our condition. I set up the group to encourage people to join so we can unite and all say loud and proud ‘Lymphoedema is part of who I am.’
It’s taken me a few years but thanks to my family, Richie and St. Oswald’s Hospice, I have learnt to live with my condition instead of fighting against it.
In July 2009, I attended St. Oswald’s for a re-fit of my stockings as they were not supporting me as effectively as they used to be. My measurements were taken and I was advised to try a different material of stocking which were sturdier to provide me with more support around my knees. I am delighted to say that once my new measurements were taken I was now fitting into a size 2 stocking! This was something I never thought I would achieve. Over the years my swelling has gradually been getting better – I am very fortunate that I have been able to control my swelling and maintain it through wearing my stockings all of the time, receiving manual lymphatic drainage at St. Oswald’s, paying for reflexology and I have also changed my diet which seems to have helped massively. I have managed my swelling gradually down from a size 7 stocking now to a size 2!
I was so delighted that for my hen do to celebrate this great news I requested that all of my friends wore bright coloured tights so I could have the chance of wearing a skirt for the first time in 8 years! I was still able to wear my compression stocking under my tights. We all looked great! I wanted to pay tribute to all other lymphoedema patients out there that things can get better for us and although I don’t know what the future holds, at the moment I am going to enjoy my new size 2 legs while I can!