Patient Advice

Arti and Tatum: It gets to that point where you can’t keep pleasing people. The reality is they find it really confusing if you tell them that you can’t do something, but that is something they have got to work through. You have to honour how you feel. It took me years and years to say, “I can’t go out tonight, I can’t do that”. Some people drift away. Some friends can’t cope and some friends stay. I think you just have to realise that there are people who will stick by you and, if they don’t, then they don’t really deserve to be your friend anyway.

Arti: Sometimes I go, “Oh that sounds fun”, but at the back of my mind I think, ‘oh I can’t do that’. I think communication is key when it comes to anything. If you don’t get your points across, that person you are with, or your friends, won’t know how you are feeling. They will make assumptions leading to miscommunication, causing your anxiety to kick in straightaway. You need to be able to say, “I want to do it, but I can’t do this – I actually physically cannot do it.” Just tell them how it is. Whether they understand or not, that is up to them, but we know where we stand.

Arti and Tatum: I think because it’s hard for others too; you need to be patient and understand this is a big change for them. I had a relationship that started when I was actually fit and able, and then, when my health changed, it became a massive journey for my partner too. Although you love and care for them, there comes a time when there’s only so long you can wait for them to get it. Explain to them, be patient with them, empathetic, but it has to be both ways, because if it’s not a two-way thing it’s not going to work.

Richard: Socialise as much as you can and find a group to be a part of in real life, find belonging.

Tatum: I can’t get up and down stairs, I can’t bend down, I can’t stand up without a support – but I look like a normal twentysomething year old. Often you can’t tell that I am disabled, which I find challenging every day. For example, if I ask someone really politely if they need the disabled seat that they are sat in and they scan my limbs for some sort of conclusion. Even when I say, “I’m disabled”, there is still this really hostile kind of energy. I think that people just have to understand that not every disability is visible. You have got to take someone’s word for it. We need to have more sense of community and care.

Hannah: I think the right person for you is out there. If someone loves you, they are going to love you regardless of a disability. The fact that my condition was largely invisible, was an issue for me. I wanted to communicate the difficulties I had, but my condition is quite complex and affects me in a variety of ways which aren’t obvious. A lot of my anxiety was around any issues related to my disability that might come up if we went out somewhere – “why are we having to stop? Why can’t we do lots of walking?” The only way I knew how to deal with it was to send Harry an email, that basically told him everything after we had been going out for a month. I didn’t want to tell him about one thing and then a week later say, “oh and there’s this other thing” – I just wanted it over with. Putting it in writing gave me time to think things through – to try and organise it in a way that made some sort of sense. I included a lot of information but put things in simple terms, rather than using medical terminology. Though I shared all this personal information, I felt less self-conscious by doing it that way. The email allowed Harry to process it, and then started a conversation. I appreciate that it must have come very out of the blue for him, but we were able to build from that. I made it very clear that he can ask me any questions.

Tatum: I am really independent, but I can struggle with this in a relationship. It is really hard when someone tries to give me independence and sees me struggling at the same time. It is not only hard for me, but for them as well. I think it is all about communication. Over time as I have got older, I have realised there are people who will get it. You just have to really communicate where you are coming from, and you have to be really raw and honest with that, which is a challenge in itself.

Donna: Dating and relationships are an emotional minefield for anybody, for those with neuromuscular conditions, it has an added layer of trepidation. The progressive nature of the disease is a difficult subject to bring up at any time, especially when embarking on a new relationship. If the condition is not immediately apparent, at what point do you bring it up? You don’t want to scare anybody off at the outset, nor do you want to start a relationship with a false impression of what the future might hold. For those already in a relationship, the patient’s changing body may reduce self-esteem, which can lead to loss of libido. For some, the condition’s physical effects can lead to sexual dysfunction, which can put a strain on a previously sexually fulfilling relationship. As with, all the aspects of neuromuscular conditions, there is no miracle remedy for this, but being open and communicating effectively, can only help to resolve these difficulties.

Andrew: Before I got married, one of my anxieties (when I first got diagnosed) was: would I find a partner that would accept the condition? Would life become too difficult because I wouldn’t be able to contribute in the normal way? Now I’m married, I’ve got a lovely 5-year old and, although that journey has not been straightforward – we went through IVF to have Thomas – but we came out the other end and it’s been worth the struggle.