Endometriosis: I am resilient. I am a fighter. I am still beautiful.

Beautiful Endo Warriors. Photo courtesy of the Barbados Association of Endometriosis and PCOS

The month of March marks Endometriosis Awareness Month. We want to take a moment to send love, light and encouragement to women who are living with this painful condition. Let us also remember that the life of someone with a chronic illness is impacted in ways that a healthy person cannot begin to comprehend. Sometimes the psychological impact of the illness is far greater than the physical.  What are YOU doing to best support the women in your life living with this chronic illness?

Health is multidimensional. In fact, as an endometriosis sufferer, it isn’t the physical part of the condition that has impacted me the most.

I personally felt that when I began to process my diagnosis, treatment options and my future based on this condition- that was what brought me the most heartache. Many times after my diagnosis, I had bouts of negative emotions ranging from anger, depression, frustration, fear and even sorrow.

And I felt so alone.

I’m in no way an expert on mental or psychological issues. So I reached out to my former classmate and colleague, psychologist Vania Patrick-Drakes to discuss how important it is to also address the mental impact of chronic illnesses such as endometriosis. Here’s what I learned;

Vania Patrick-Drakes: “Aside from physical symptoms, endometriosis is an illness that can have several emotional and psychological implications.”

Me: I know this from personal experience as even before my diagnosis, I was depressed due to the fact that I could not function effectively when I was on my period. My life was completely disrupted for at least two days out of each month.

Vania Patrick-Drakes: “For some women who have been experiencing physical symptoms for extended periods of time without knowing the cause, a diagnosis of endometriosis may result in feelings of relief and a determination to manage the illness as best as possible.”

Me: This does speak to the character of myself and other endometriosis sufferers who are determined to fight the condition and its symptoms to the best of our abilities. Also, the presence of a strong support system is a key factor in helping us cope more effectively.

Vania Patrick-Drakes: “For others, the more prevalent reaction may be one of fear, anxiety, or even a strong sense of loss. Fear over what the future may hold now that endometriosis has entered the picture. Anxiety perhaps about being the subject of professional discrimination and becoming labelled as the woman who is “always taking days off”.

Me: This was my reality. When I started my career in teaching, I took many days off  because of the excruciating pain associated with endometriosis. At this point in my life, this was a normal occurrence because I had experienced this throughout university. When I was a student I spent many days at home vomiting and crying out in pain. I didn’t know what was wrong with me at the time and I chucked it up to period pains/dysmenorrhea. Once during a staff meeting, I  remember someone indirectly highlighting the fact that a member of staff was frequently absent during the school year. I knew I was the culprit and it was aggravating.

Women suffering with endometriosis are not “faking it”.  It is a condition that is truly debilitating and one that requires more attention especially in the Caribbean. Whether we want to admit it or not, as Caribbean people we are EXTREMELY quick to pass judgment and view others in a negative light. We delight in other people’s misfortune. We take pleasure in knowing that we are doing better than someone else.  It is within this context that endometriosis and other chronic illness sufferers find themselves. You either suffer in silence or face judgment.

Vania Patrick-Drakes: “For some endometriosis sufferers, there is the potentially life-altering news that fertility will now be a challenge for couples wishing to start a family. Add to this, undesired side effects of prescription drugs; fluctuating weight, drastic mood changes, depression, self-esteem issues, feelings of inadequacy and even eating disorders can now become a reality.”

Me: Endometriosis sufferers have it rough. I’m not looking for a pity party neither am I exaggerating. The condition is painful and treatment options can be painful, costly and may not even work. Then there’s the issue of infertility which we don’t talk about enough in the Caribbean. A taboo subject I suppose. It’s shameful if a woman doesn’t want children and pitiful if she can’t have them. So again, we stay silent and continue to internalize these negative feelings. Berating ourselves, feeling unworthy and frustrated. We’ve disappointed our friends and families-as if we wished this upon ourselves in the first place. God forbid if we complain about the pain and the feelings of inadequacy- we’re dismissed as being sensitive, melodramatic or irrational.

Vania Patrick-Drakes: “Loved ones are not exempt from the emotional implications of an endometriosis diagnosis. Frustration and helplessness are common and these are understandable emotions that are experienced when a loved one is suffering with a chronic illness. For couples, thought recalibration may be necessary. Especially when plans of having children may have existed.”

Me: With this illness there is going to be a trickle-down effect. The condition does not only affect the diagnosed individual. At some point in time friends and family will also have to deal with the repercussions and may feel a sense of helplessness. You can’t always “take two pills and call the doctor in the morning”. It is essential that all parties involved (patient and loved ones) recognize that their emotions are valid. I’ll leave you with these final words from Vania:

“As with many other illnesses, emotional support for women diagnosed with endometriosis is crucial.  It is important for us to first acknowledge that the emotions felt – and the ability to feel an entire range of them from happiness, to being distraught, and everything else in between – are healthy and apart of being human. It is also important to be aware of the impact that emotions have on our daily lives.”

 

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