I thought I'd write this post about the online support group I joined a while ago when attempting to go my head around 'Everything' that had happened. "An online group? Isn't it just for people to moan?" I hear you say. Well, actually, it has been a really useful resource for me personally and as a practicing physio I would definitely direct a patient with a hip condition to a group like this. Here's why:
Head mash
On being given a diagnosis of DDH in adulthood, your brain can seriously become like mashed potato. The shock, disbelief and confusion are very real. So many questions and some very big life decisions to make, like whether to have surgery or not or when to have children. Connecting with others who have been there is a very useful way of starting to make sense of it all. This is important because these are big and difficult decisions to make and it takes a while for it to sink in.
Birds of a feather
Flock together... Yeah I know, we're not birds. BUT there is definitely something in it - joining up with those in a similar situation and sharing stories and practical tips. Having friends and family around who sympathise but don't really know what it is like to go through long-term pain and surgeries can become isolating, but knowing there are other people out there in the same situation takes the sting out of it a bit. It makes you feel a little less alone.
Questions
Hands up who thinks they can remember everything they've been told from one hospital appointment? Didn't think so. Most of what I'm told gets forgotten as soon as I walk out of the door (these days I use the old notebook and pen trick). Having an online resource like a support group is helpful as it means all those things you forgot to ask you can find answers to. Even little things like "what should I take into hospital?" are very useful for preparation for surgery.
Treatment pathway
Sadly, it seems that sometimes when a diagnosis of DDH is given in adulthood, a patient may be told there is nothing they can do, and that they should return for a THR when the pain is unbearable. Frequently there are new members on forums stating that this is what they have been told and asking what on earth they should do as their pain is affecting their mobility, life and work to an increasing extent. We now know that there is another option in terms of pelvic osteotomy surgery, but not all health professionals are aware of this and often it's only by joining an online group that a person might find this out.
Eenie meenie minie mo
Those
with a recent diagnosis often find it difficult to know who to go and see to discuss their options, and unfortunately
this is something that a GP might not necessarily know. From my
understanding, there are roughly 4 or 5 specialists in the UK who are
experienced in treating a high volume of adult DDH patients. Those on
online forums will have more experience of the ins and outs of where to
find these surgeons.
Expectations
Recovery from a PAO is long and tough, the lengthy time off work and hard rehab are a huge
undertaking for an individual and their surrounding family
& friends. Reading about others' experiences through groups and blogs online can provide a realistic idea of what to expect from the surgery and recovery. This is necessary for managing a person's expectations both in the short and long term, so it is usually encouraged by specialists.
Encouragement
Most of all, on the online forums is encouragement, whether you're having a bad day post op or worried about the future of your hips, there's bound to be someone on the group who's been in a similar situation. A positive word from another hippie is sometimes all that's needed - and it means all the more because you know that person's really been there. It's often quite touching reading others' responses to posts like this.
P.S. For some suggestions of Hip Dysplasia Support Groups, have a look on my Links page!
P.S. For some suggestions of Hip Dysplasia Support Groups, have a look on my Links page!
