Clara is a fellow endometriosis sufferer and a friend. Endometriosis brought us together and we very quickly developed a deep bond, as those with difficult shared experiences often do.
I chat to her below about her experience of living in pain.
Can you tell me a bit about your condition, when you were diagnosed and it means for you?
I was diagnosed with Endometriosis stage 2 in 2016. Stage 2 is defined as “mild” endometriosis but one of the complex things about this disease is that there is often little correlation between the severity of the stage and the amount of extreme and constant pain it causes.
I was very lucky to be diagnosed very quickly as on average diagnosis takes 7 years. My pain developed rapidly over a couple of months to an unbearable level. I had a wonderful GP (young, female) who suspected that my pain was caused by endometriosis even though it was worse during ovulation, which is rather uncommon.
I have had 2 laparoscopies but I am still not pain free. I have seen so many gynaecologists and surgeons in different countries and yet no one can explain why my pain persists.
Over the years my pain changed and now moved into my sacral joint.
How does that constant pain affect your day to day life?
I feel like the pain and the condition have defined how I am as a person.
The constant pain makes me feel less in control of my life and it has altered my sense of self. I feel less able to handle daily stress than I used to be and extreme stress has now become unbearable.
Pain affects and alters my every day choices and makes everything much more difficult. I am less social than I used to be and I find it difficult to keep up with hobbies and things I used to enjoy. I want to develop my career as a Researcher but I question whether I have the physical and mental energy to do so.
That is so tough. What impact does that have on your emotional and mental well being?
I feel drained and weaker, not only physically but also psychologically. Living this way shrinks your world and that is difficult to deal with, as an individual but also for the people around you. The disease puts enormous pressure on your relationships, both personal and professional.
That sounds so difficult. I know that I put huge value on friendships such as ours because we are both so acutely aware of what the other is experiencing, and that sort of connection goes very deep.
Is there anything at all that helps you ease the pain?
Hot water bottles, hot baths, oil wraps, going for a steam all provide some relief but it is always short lived. For me having well functioning bowels helps as well and I am careful with my diet to ensure I am supporting my digestive system as much as possible.
Has living this way taught you anything do you think?
It has taught me not to take a pain-free life for granted. Living with an invisible condition has also highlighted to me how little awareness we have of others internal world and in that sense it has given me greater empathy.
I struggle to explain how draining chronic pain can be, and I find even when I try to explain it (over and over again) people find it very difficult to comprehend. I think that until you have lived with something like this it is virtually impossible to understand and people can be very harsh.
I understand that completely and agree that living this way can make us much more aware of other’s invisible suffering.
What is the one thing you wish people knew about chronic pain?
I wish people knew how to react properly. Sometimes I find it is best not to talk about it as it requires so much energy and often people’s reactions can be hurtful.
For that reason it is really important to find people who understand and who support you, whether that’s a pain coach, a therapist or a community of women with similar experiences.
Hearing Clara articulate her experience is heart breaking. That anyone should have their lives so defined by something like constant pain is deeply unfair.
Sending love to all who need it. Let's keep sharing, supporting and talking.