Buddy system needed

I am 67 and have had the very bad luck to have had severe endometriosis and systemic lupus. I am a very experienced patient and have learned a lot on both very difficult roads. I am appalled at just how little things seem to have moved on for both conditions since I was eventually diagnosed. The desperation of sufferers posting on here really angers me. We need to instigate a buddy system whereby experienced articulate people can support others at the start of their journey. I suggest a data base of people willing and capable of supporting others at hospital visits as a start. I have been an inpatient on more than one occasion and come across another younger woman utterly distraught because she feels no one is listening to her and taking her story seriously. I am lucky enough to have been able to listen, process what I hear and give some much needed support. I am not a doctor but I know an awful lot about endometriosis and SLE. I wish I didn't but I cant undo the experience of the last 40 years. Can I and others like me help?

1 Reply

  • Versailles - the endouk charity supports lots of support groups around the country where volunteers actually do meet and provide support for each other and work in local communities spreading awareness.

    Have a look on the endo UK website to see if there is a support group near you or you can call them to set up one for your area.

    I wish there were teams of us able to go to each and every secondary school to talk to the pupils male and female about endo.It is so widespread and affects everyone to some extent - whether that's because of a family member, friend, co-worker or later on their own daughters who could end up with endo.

    Awareness of the impact of the diseases can help not only those who may even now be aware something is wrong - but clueless that they have endo, or help pupils to recognise the signs in others and provide them with support and advice on where to get help.

    There are a number of events in the year used to raise funds for the charity to help supply leaflets and fund the phone help line too which you can get involved with if you feel up to it.

    endometriosis-uk.org/get-su... lists the support groups currently operating.

    Providing one to one support is very tricky legally. All volunteer supporters would need DBS clearance to work with vulnerable people and youngsters which costs money.

    It might be something that is better off being done through the support groups and befriending those needing extra support that way, rather than doing anything in any official capacity.

    Besides the costs and the time needed to provide such one to one support is probably beyond many endo ladies budgets. So many of us being either unable to work or on very low incomes due to the illness as well as being ill a lot of the time too ourselves. It's a lovely thought that we could have a buddy system - but in reality it would be very difficult to arrange that on any official basis.

    Perhaps it might be worth contacting the local GP surgery and gynae clinics and school common rooms, advertising for setting up a local support group for girls and women with chronic illness - not just endo but adenomyosis, PCOs, SLE and other long term conditions. Contact local CAB and let them know your details so they can refer women to you who are struggling to cope on a practical level.

    Joining forums like this and the many others, where girls and ladies can access round the clock support online are excellent ways of providing help when you have the spare time too. That's what I try and do, and I work with my niece's secondary school to provide support there too. I do work in a school so have been DBS cleared to work with kids at one school and that seems to have covered me fine with providing help at the other school too.

    Contact local school nursing teams and ask them if they need support and volunteer your services as someone they can call on if they encounter girls with problems stemming from endo or SLE who could do with having extra one to one chats.

    Even if you are not up to working on this full time - by letting people know you are there and willing to help when you can, it can make a difference.

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