Chronic Illness Warriors: Interview with The Spoonie Society Founders
The Spoonie Society founders Dominique Ribeiro Da Silva and Helene Hill share how they stay positive when faced with adversity, offering hope and inspiration to others navigating similar challenges.
D.S. I got mine at school! From the get-go it was painful. I had terrible cramping, stabbing pains and long heavy periods.
H.H. I first got my period at school (of course!). I remember panicking as I had ballet class that day and didn’t know what I was going to do. I didn’t tell my mum but ended up pinching some pads from her bathroom. My periods were ‘okay’ in the beginning however as time went on, they got progressively worse. I remember missing school some days as the pain was so bad. When I was about 16, I went on the pill and this temporarily fixed these issues until I went off the pill at 22.
D.S. I was diagnosed with endometriosis at 21. I had multiple ultrasounds which all came back clear, but it wasn’t until my boyfriend’s mum at the time mentioned she had endo, that I started to push for a diagnosis. Soon after, I lost my right ovary and both tubes, and had to undergo IVF to conceive my son.
H.H. After I came off the pill at 22 my periods got progressively worse … I would be in bed for the first two days of my period each month. And my pain wasn’t only when I had my period, it was all the time. I went to ED a few times and saw my GP who flat out told me there was no way I had endometriosis. I kept pushing for answers as I knew something was wrong. I was then diagnosed with Stage 4 endometriosis and had my first laparoscopy. Since then, I have also been diagnosed with PCOS, Adenomyosis, IBS and Gerd. Being diagnosed with Endo was tough, being told you have an incurable disease at 24 was not the path I ever expected.
D.S. Expensive, haha! I’ve had 5 lap surgeries, nerve block procedures, IVF egg retrieval and transfers - not to mention the number of injections, medications and steroids I’ve been on to manage pain and symptoms. Endo has been a long journey… an expensive journey!
H.H. Very long to say the least. I have had 5 Endometriosis Laparoscopies, had both fallopian tubes and my left ovary removed, I’ve frozen my eggs, had two ketamine infusions, done three rounds of hypogastric plexus and ganglion impair (nerve blockers) and I’ve also been through medically induced menopause for 9 months. I have tried so many versions of the pill. Thankfully now with the Mirena I haven’t had a period in 5 years. I’ve also tried Acupuncture, cutting out gluten, remedial massage and anything else you could think of I’ve probably tried.
D.S. I don’t think you can prepare for something that is so unknown. I like to go in with an open mind and come out knowing it’s all for the better and the recovery will be short-term for some long-term relief. As for essentials, pack what you’re comfortable in! I don’t like bringing PJs as you usually have a catheter and heaps of incisions which bleed … I’d rather bleed on a hospital gown than my own stuff! I try and treat it like a holiday, I get fed, I get to relax, recover and focus on me!
H.H. I always love to bring some snacks or chocolate and my own pillow from home is always a winner! Managing expectations can be useful as well. I went in for my second surgery with big expectations and hopes that it would cure me, and I think being overly optimistic didn’t help my mental health as it didn’t give me the relief I was craving (and so desperately still need).
D.S. You have to do what’s right for you. I haven’t found anything i swear by for my endo other than my medication, heat pack and health care team.
H.H. I haven’t found any diet or supplement that comes close to helping with my daily pain and symptoms. I have quite a few different medications that help reduce my pain and inflammation, but they don’t fix the problem entirely. My favourite alternative would have to be my heat pack. On a severe pain day, I like to put my PJs on, get in bed with my heat pack, have my pain medication and watch one of my favourite shows to help pass the time.
D.S. Helene and I work amazing together. Having someone who truly understands is always a plus, but being chosen family now is even better. We hold each other accountable and tell each other off when we’re overworking - our most toxic trait is our ambition and work ethic!
H.H. I don’t think we balance it well but we definitely make it work. I do think since Dom and I both have Endo and PCOS we understand each other’s physical capabilities and that every day can look so different. We are an amazing team and always take on any extra load when one of us is flaring or unwell. I don’t think either of us could’ve started and succeeded in this business alone or even with someone who wasn’t chronically ill. We both sacrifice our health for our business sometimes (to our detriment) but having this business also gives us the flexibility to work from home, go to doctors’ appointments during the day as well as taking time off for surgery.
D.S. Staying positive is hard. I think it’s important to acknowledge when it’s shit, and let yourself feel that, but also be realistic that I’ve got a pain management strategy there for a reason, and it helps.
H.H. I think knowing that the pain will eventually ease is so important … as is feeling the feels. I love a good cry and talking to people like Dom that truly understand what it’s like. There are certainly some days I wonder if the pain will ever end but having things to be excited about help me get through. I also see a psychologist regularly which I have found to be such a valuable tool for my mental health.