They told me I had conversion disorder and that I was imagining the pain. Then, I started to think I was going mad and I think I am mad.
It was a sunny day as we sat outside and talked. We were in the courtyard of a mental health intermediate care centre. I sat and listened as my friend explained her darkest moments as she threatened to overdose and her husband called an ambulance.
After many, many hospitalisations, the inability to eat, drastic weight loss this is where my friend found herself on this day. This is very clearly not the beginning of this story and it was certainly not the end. The punch line came in the months that followed when she took my recommendation (and that of others around her) to find a new general practitioner to fully review her health.
Endometriosis, in my view, is one of the worst non-terminal diagnoses for women to experience. It is under-recognised, under-diagnosed, and under-supported. There is a lack of recognition and support for people with the condition in education and employment, which in turn has a significant impact on quality of life. For my friend, being told that her abdominal pain was ‘in her head’ and that she required psychological help was the epitome of how far the health profession alone still has to go in better identifying endometriosis when it presents.
Though I am not free of women’s health issues, I am very thankful that endometriosis is not something that is on my personal plate. It has been sufficiently gut wrenching for me to watch several girlfriends take on that battle from initial symptoms, to fighting for a diagnosis, and then wading through treatment and management which correspondingly are a literal ‘rock and a hard place’. Along the way, they need to deal with cyclical flare-ups where some months are simply worse than others.
As a friend I have those fleeting moments of ‘too much information’ as I realise I am more aware of my friends’ ‘cycles’ than I am my own. However, I have learned that it is good knowledge to have if you are going to be able to be there as a friend. Active endometriosis can be debilitating and at those times they can need our support more than ever. Here are my top tips for being the best bestie you can be in supporting a friend with endometriosis:
Think about their household needs
If you are doubled over in pain, the last thing on your mind is doing the grocery shopping. It’s like asking a Mum in labour, so do you want to drop past the supermarket on the way to hospital? (Do not do this: you may sustain life threatening injuries.) If you can, offer to make arrangements to exchange some money to do their grocery shopping for them. Consider asking another family member to write the list, having your friend check it if need be, and make sure they detail exact times – flavours, size or specific brands just to keep things running smoothly. Alternately, offer to drop off a meal or any essentials that they need urgently.
Doing the washing can be its own little nightmare when you abdominal pain. Lifting and bending is like asking, “Can I stab you a few more times whilst you are hunched over there?” If there are kids in the house, get them to help. Teach them to sort washing into lights, darks, colours and ‘special items’ that are either ‘fluffy’ or ‘slippery smooth’. (Identifying jumpers, towels and special fabrics like silk and satins to wash separately.) Simply rebooting the machine, throwing suitable items in a dryer and getting the rest of the family to step up with hanging wet and getting down dry washing is a huge help. If your friend complains about feeling like they are falling short then you can give them permission to fold dry washing by setting up a basket next to them and encouraging them to make piles for others to put away.
Think about their personal needs
3. Self care
Find out about how your friend manages their pain and support them with this process. If they need to huddle up in a ball in bed, think about what you can do to entertain their kids or take their dog for a walk for them. If the pain makes them short-tempered, offer to take the children out for a walk or an outdoor activity to give them some peace and quiet.
If they use a hot shower or bath to ease the pain, drop in some pamper products to use. Similarly, think about their favourite hot or cold beverages (depending on the season) and drop off something special as a treat.
4. Driving Places
Driving, my goodness, do not forget driving. If you have ever even driven a car whilst being busting to go to the loo you will know that it is hard to focus with even mild discomfort. Throw your friend in the passenger’s seat to run errands that they feel they have to do and let them focus on managing their pain.
Think about their community needs
5. Back up their commitments
Do they have involvement in the community that is going to be missed? If they volunteer for a local organisation, contact them as ask if there is something you can offer in lieu. For example, if they supply meals for a local ‘freezer meal bank’, you can add some in yourself. Maybe in lieu of their usual volunteering in a thrift shop, you can just do a quick declutter of your own home and drop in some donations of your own. Similarly, if they were meant to provide a plate to share for a school class party, then just make it happen for them.
6. Be the family they wish they had
Perhaps, most importantly, are there any people that they take care of or spend time with in the community. Can you take their Mum to the local senior citizen’s club for them? Can you run their father to their doctor’s appointment? So often, we as women, carry the ‘helpmeet’ workload for others in the family and we feel that we have to shoulder it alone. The best of besties can step in and, like they are a part of the family, bridge that gap in those really hard moments. If needed, do so in combo with having your bestie in a passenger’s seat as discussed before.
Be their Bestie
7. Friendship comes first
Last and most definitely not least, just be their friend. The process dealing with a chronic source of pain accompanied with a mishmash of different treatment options and pathways can trigger a myriad of emotions – sadness, anger, frustration, distress just to name a few. Sometimes we just need to be the person who is there to listen and without judgement and let them let out those feelings that are welling up inside.
Endometriosis might be an insidious, horrible beast to face but we can be there to remind our dear friends that they are not alone. Being the person who walks beside them in their journey is an amazing privilege and to be the one that helps hold them up when they are week even more so. If I can encourage you to one thing today, it is to show love to your friends like your own life depended on it. Be the friend that you would want for yourself.