The Neuropathy Carer

It's so easy to forget that you're not the only one experiencing an illness. Family, friends and especially loved ones, are often the unsung heroes in the lives of neuropathy patients but these are relationships which can sometimes be unwittingly abused and lead to unnecessary stresses. Either the patient becomes too demanding, or the carer becomes fed up, or too worn down to carry on, or other people assume that because one person is taking most of the load, they don't need to offer support themselves. These are all understandable and mostly just human nature but everyone involved with neuropathy in the 'family', including the patient, needs to occasionally spare a thought for the carers, who after all, never asked to be given the role.
This article from gmfa.org.uk (see link below) highlights the problem and reminds us what sort of pressure such a disease can bring. It's a situation already well-known to people who have HIV-partners who are, or have been ill. It hardly seems fair that yet another disease is ruining some of our lives.

Your partner as carer

It’s not uncommon for partners of HIV positive men (or women ed.) to assume the role of primary carer in situations where the HIV positive man (or woman ed.) is experiencing problems with his (or her ed.) health.

Having your partner become your primary carer can be highly stressful for both of you. Emotionally it is likely to be hard for your partner to cope with seeing the person he loves in poor health, and switching between the roles of lover and carer may prove difficult for him.

He may have fears about your future which he doesn’t feel he can discuss with you. In this situation it’s important that he finds someone to talk to, maybe a close friend, so he gets the chance to release any bottled up emotions and fears about your situation.

If you are in poor health, having to rely on your partner can cause feelings of anger about losing some of your independence, and guilt for having to lean on him so much. Often in situations where one partner is also primary carer, both will have worries that aren’t discussed. There is support available for you and your partner if you are in this situation, but being honest and open with each other, or even with a close friend, about how you feel will help you to better cope with the stressful times.

"My partner hasn’t been well for a long time. He has severe pains in his hands and feet caused by peripheral neuropathy and this makes it difficult for him to get about or do much for himself at least half of the time. This has meant that I’ve found myself in the role of his primary carer when he’s in pain. Although I’m kind of used to it now it hasn’t been easy, and sometimes it isn’t still. As well as working full time I also do most of the shopping, cooking and cleaning so I don’t get much time to relax each day. This on top of watching the man I love in distress most days is very hard, and sometimes I really do struggle to cope. Having said all this, we do manage to get by, and despite everything we have been and are going through we are very happy together. However, I can’t tell him how much it affects me when I’m finding it hard going – I just couldn’t pile up that guilt on him when he’s already in pain. I have a lot of close friends who I can offload to and they give me the support I need when I ask, and without them I don’t know how I’d cope. (Adrian, 37)"

http://www.gmfa.org.uk/positive/relationships/your-relationship

If you do feel that you or your partner needs some help dealing with your situation either physical, financial or emotional, then you’ll need to find information about the support available, from your home doctor, your HIV specialist or your local HIV organisation. Failing that, the internet is of course a possible option. Whatever happens, don't suffer alone and don't put it off until it is too late. If it's getting to be too much for you or your partner, don't hesitate to ask for help. Avoiding a situation where neuropathy can ruin your relationship permanently, is of paramount importance and somebody somewhere should be able to share your burden.