Acromegaly: A caregiver's perspective

Oftentimes, when an individual is diagnosed with a life changing health condition, their loved ones can be affected as well. Taking care of someone with acromegaly or living by his or her side, can bring about new challenges and stir up a variety of emotions. In this article, Deborah Muldoon shares her experiences as she journeys alongside her husband John after his acromegaly diagnosis.

In the fall of 2000, I remember getting a phone call from my husband's otolaryngologist. John, my husband, had gone in for x-rays prior to this after having sinus issues. I told the doctor John wasn't home, but asked if it was urgent. Thirteen years later and I still remember his reply: "There's something on the x-ray. John needs to see a neurologist."

We found out John had a tumour on his brain, more specifically, on his pituitary gland. The diagnosis of acromegaly soon followed, a syndrome that produces excess growth hormone. You can imagine our initial reaction - panic! You hear the words tumour and brain in the same sentence and an assortment of thoughts come to mind. Fortunately, I myself had gone through a variety of surgeries and experiences and knew panic wasn't going to help the situation.

Since then, John has had two surgeries, removing 90% of the tumour, but its effects continue to this day. We are far from being 'out of the woods.' To help, we began doing a lot of research; we read, asked questions, talked to doctors - everything we could to prepare for life living with acromegaly. I found the more we knew, the better we had a grip on the situation.

I've found that as a caregiver to someone with acromegaly, my role and attitude is just as important as theirs. I remember in the beginning feeling angry and frustrated. I wanted to continue life as it once was and have John do the same. Oftentimes, he'd be too tired or exhausted, he wouldn't have the same zest for life he once had. Once I learned more, I knew it wasn't his fault. Of course this led to me feeling guilty for being angry in the first place. I think this is normal - the emotional rollercoaster a caregiver experiences when trying to move forward with a new condition in the relationship.

My advice to anyone who has a loved one diagnosed with acromegaly is to know challenges are going to arise. Typically, they're not going away, so it's better to face the changes head on. Keep a positive attitude and believe there is a way to get things done - whether it's to compromise to push chores back timing wise, or to hire others to do jobs your loved one would typically do - there is always a way! It's about respecting the condition, but not letting it control your life.

I think another valuable lesson was to take care of myself. Of course I wanted to love and support John in his journey, but I couldn't have done that if I didn't take care of myself as well. Be sure to keep your independence. For us, it was important to remember although our marriage is facing a new obstacle, it's still a marriage. It's not a nurse/patient relationship, but husband and wife. I needed to have "me" time, see friends and family (on my own if need be), talk to people, continue to do things I enjoyed doing and John understood this. This was needed to deal with the ups and downs - the emotions and challenges.

Along our journey, we have accumulated quite a bit of information about acromegaly. We bring this with us to every new doctor we see. We've experienced a lack of understanding in the medical world, a lack of doctors who fully grasp the effects of acromegaly. So we not only research continually, but we constantly look for doctors who are willing to listen and appreciate the depths of issues acromegaly affects. If you have any symptom, any symptom at all, I would urge you to bring it to your doctor's attention.

My last piece of advice is one that's been around for ages - don't take life too seriously! Acromegaly is a serious condition with real consequences, but life is still good. Keep things in perspective by finding the humour in life, keeping a positive attitude, and being flexible - it will go a long way in continuing life with acromegaly. 

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