As a person living with acromegaly, you’ve likely experienced a shift in relationship dynamics and interactions since your diagnosis. Perhaps you attended a family reunion or holiday gathering, and some friends or family members commented that you looked different but couldn’t put a finger on what the change was. Or maybe you recently changed jobs and want to make a good impression with your new employer and co-workers, but also need to ensure you schedule the time you need for doctor appointments.
These kinds of situations can be exhausting and make you feel self-conscious or uncomfortable. Maintaining intimate and casual relationships can be challenging when you’re navigating the mental toll of living with a chronic disease and the feeling of being misunderstood. And the physical symptoms of acromegaly such as mood swings, headaches, and joint pain can add to your mental, emotional, and physical burden, leaving you with little energy to invest in relationships. Of course, these changes are difficult for your loved ones to navigate as well.
Now, take a deep breath. Know that you’re not alone; it’s common for relationships to change when someone is diagnosed with a rare, chronic disease like acromegaly. But there are ways to redefine your interpersonal relationships, so you feel fulfilled and empowered instead of overwhelmed or even ashamed.
This article explores why intimate and casual relationships matter – especially for people with acromegaly, common relationship challenges that can occur after a diagnosis, and how to rebuild your relationships to accommodate your life with a rare disease. You don’t need to be alone: you can have healthy relationships that support and uplift you on your acromegaly journey.
Why are relationships important for people with acromegaly?
Social connections are a basic human need like water and oxygen. Scientific research shows we are designed to connect with others and to want relationships with them. Connections with partners, friends, and co-workers help us form our support systems. Similarly, strong relationships can also provide much-needed emotional support when you have a bad symptom flare-up or experience anxiety due to all the changes in your life.
The challenge is that an acromegaly diagnosis can be life-changing, and interpersonal relationships are a central part of that. Someone living with the diagnosis may withdraw from established connections, even to the point of isolation, instead of working through the changes with help from others. This can lead to depression and create a cycle that’s hard to break.
In light of this, perhaps it’s no surprise that a long-term, ongoing Harvard study on adult life found that good social connections can make you happier and healthier. In contrast, people with poor or too few strong relationships experience loneliness, and their overall health and brain function can decline as they age. A 2020 study on social isolation validates these findings, indicating that “social connection is protective to overall health, while loneliness and isolation carry risk.”
But first, what do we mean by ‘social’ or ‘interpersonal’ connections, and do we need both casual and intimate relationships? In short, both types of relationship are equally important for your happiness and well-being. such as the barista who remembers your name at your favorite coffee shop or the parents you see at your kid’s soccer game. Though they may seem small, these moments are all valuable as they remind us that we’re part of a larger community, and can even lead to opportunities for deeper, more personal connections. For example, you might feel comfortable talking about your acromegaly with a coworker and discover that they know someone else who has it and can introduce you.
Intimate relationships are also vital to our overall health, and no, intimacy isn’t just about sex. Linda Rio, MA, MFT, says, “I look at intimacy as being on a continuum. It can include physical touch, but it can also include emotional connection. It includes all forms of relationships… and it’s necessary as human beings. It’s built into our needs, and it can add to the breadth and depth of our quality of life.”
Let’s look at the different casual and intimate relationships you may have:
Intimate:
- Spouse or partner
- The person you’re dating (if applicable)
- Familial relationships such as children, grandchildren, siblings, parents
- Close friendships
Casual:
- Acquaintance-type friendships such as neighbors
- Work and professional relationships, such as coworkers, boss, or a team you manage
- Social relationships, such as your book club, walking buddy, or friends from volunteering
Having various relationships in your life also makes it easier to have more of your needs met. According to Linda Rio, “Hormonally, we have a desire to reach out to others and the reason is that we are not self-sufficient as beings…we can’t do everything. When we pair up as a couple and then as a family, we each provide different skill sets.” In short, we cannot get everything we need from one person—and that’s okay.
How acromegaly can affect different relationships
While interactions among friends, family, and even coworkers all change over time, having a chronic disease can alter the dynamics of relationships in ways you perhaps didn’t expect.
Here are some examples of how acromegaly may affect your interpersonal connections:
- Spouse/partner: Physical changes in your appearance or even a lack of energy can make you feel less like yourself and more sensitive to physical touch. Furthermore, symptoms such as mood swings or “acro-rage” can negatively affect physical and emotional intimacy between partners. You may also feel a sense of shame because you don’t “measure up” to cultural norms or expectations of what intimacy should look like (i.e., picture-perfect.)
- Family: If you have chronic fatigue, you may find yourself missing out on or severely limiting time spent with your family and friends. Some people with acromegaly have said that not being able to continue in their previous job made them feel like they weren’t providing for themselves or their family, which can cause emotional strain.
“When it comes to family and home and social life, what do I have to say no to? What do I have to not do? Who’s going to be affected by that? Are my kids going to understand? Is my spouse going to understand? It’s very complicated and requires a lot of attention to symptoms and attention to energy levels.”
Anonymous acromegaly patient, Voice of the Patient: Living with Acromegaly
- Dating and romance: It can be hard to get to know someone when trying to carefully navigate talking about your condition. Fatigue, limitations, or physical appearance may make an existing relationship harder for you, or even make you want to avoid dating in the first place. If you do decide to date, you might feel unsure as to how much to disclose about your disease and when. You may also expect rejection, which can affect your self-esteem and behavior in future relationships.
- Close friends: Friends may not understand or believe you when you say you’re too tired to attend a party or other social gathering.
“Fatigue has also caused me to cut back on socializing, and I know this hurts people I care about. Once I had a close friend accuse me of using acromegaly as an excuse to blow off a party invitation. She couldn’t comprehend that I really didn’t have the energy.”
Anonymous acromegaly patient, Voice of the Patient: Living with Acromegaly
- Casual friends: Some people with acromegaly may experience financial instability because of job changes or frequent doctor visits. Going out with friends or participating in activities can be a challenge, and you may feel embarrassed to talk about money, especially if the relationship is more casual. People with rare diseases also say that fatigue can make it hard to be fully present and engage in conversations, presenting a challenge for relationships of all kinds.
- Professional relationships: Coworkers or even your boss might not understand your need to adjust your responsibilities at work due to fatigue or other symptoms. You may fear judgement from them.
As you know, a lot can change when you have a rare chronic disease. Dealing with relationship issues on top of the physical and emotional challenges of living with acromegaly can feel overwhelming: but there are ways you can mitigate these challenges and rebuild your interpersonal relationships so that they are healthier and stronger.
How to address relationship obstacles head-on
When tackling relationship hurdles, there can be many different approaches. Rebuilding your casual and intimate connections will likely require a combination of methods and can take time. That’s okay. The important thing is to make time to nurture these relationships so you can have a strong support system and live a more fulfilling and rich life that satisfies the basic human need for connection.
Here are some ideas to consider:
Find groups of like-minded people
Unfortunately, not everyone in your life will understand what you’re going through or be capable of offering support; this is why finding like-minded people is so important. Acromegaly support groups, for instance, can help you feel heard and validate your feelings and experiences. You might also learn how others who are further along in their acromegaly journey have navigated evolving relationship dynamics.
“There is nothing that replaces talking to another patient who is going through something like what you’re going through.”
–Linda Rio, MA, MFT
Consider exploring nonprofits and patient-centered organizations, such as Acromegaly Community and Pituitary Network Association, that provide access to support, resources, and community forums.
Communicate regularly with your healthcare team
Many of the symptoms that may affect your relationships such as fatigue, headaches, joint pain, or mood swings can and should be addressed with your doctor or healthcare team. If you can, find an endocrinologist who specializes in acromegaly, and make sure it’s someone you trust.
Once you have a healthcare provider you like, practice being open with them about all your symptoms and their effects. This might feel uncomfortable at first. For instance, if you have severe headaches, this may affect your ability to socialize, hold conversations, or do your work. Having this information can help your doctor make targeted medicine recommendations. Know that many people with acromegaly have tried several medications before they found the one that was right for them. Clinical trials can be sources of new therapies as well.
You should also feel empowered to bring up questions or concerns about how acromegaly affects your sex life. Not all doctors will know to ask about this area. If talking about sex with your doctor feels embarrassing, try writing down your concerns and sharing them with your doctor that way. Do what works for you!
Explore therapy
Therapy can help you navigate all kinds of relationships, including the one with your spouse or partner. For example, many people find it hard to talk about sex or intimacy with their significant other, especially if some physical changes make you feel awkward. A therapist can help you find the language to work through these obstacles.
“People don’t always realize that being able to sit down and talk about what it’s like to live with a rare disease often requires the help of a therapist. It can help put people at ease, provide some words, and normalize experiences. It can be tremendously helpful.”
–Linda Rio, MA, MFT
For a lot of people, seeing a therapist might be intimidating. It requires a certain level of vulnerability to share your experiences living with acromegaly and how they are affecting you. A great therapist will ease you into those difficult conversations so you can take things at your own pace. You can even find a therapist who has experience working with people with rare diseases such as acromegaly. For guidance on how to find a therapist, check out this resource.
Make fun a priority
Life can be hard enough, especially when you have a rare disease like acromegaly. That’s why injecting fun into your life or trying something new is so important. Taking time to do things that bring you joy might be something you don’t even realize you need.
For romantic relationships where the spark might have fizzled, take baby steps to reclaim or rebuild that physical and emotional intimacy. For example, think back to what you and your partner did when you first started dating. Did you love movies? Picnics in the park? Bring some of these activities back into your routine. Remember, romance isn’t only about sex. Take a moment to notice what it feels like to sit next to your partner or to simply hold their hand. Bringing dating back into your routine is helpful, Rio says, as it can help things feel fresh and fun again.
Rekindling can apply to friendships, too. Make it a point to schedule a “friend date” with a close friend once a month or at a frequency that works for you. Go for walks, have lunch, or take an art class together if you have the energy. Remember what it was like to have fun together and just be.
Practice self-care
During the pandemic, you heard about people forgoing shaving or sometimes even wearing pajama pants on a Zoom call. When you aren’t regularly interacting with people, there can be less motivation to practice self-care. However, taking the time to put on an outfit you feel good in or going to the barber or salon can have a profound impact on our mental and emotional health. Of course, there may be some days when you’re too tired to do any of these things, and that’s okay. Give yourself some grace during those times and celebrate even small moments of self-care.
Other self-care ideas include making sure your diet is balanced and contains lots of fruits and vegetables, which might make you feel better. Try a new recipe or ask a friend to come over and try it with you. Maybe you scrap the home-cooked meal and order takeout together. Just sitting next to someone on the couch or sharing a meal can be an intimate experience that makes you feel more connected.
Conclusion
As you’ve no doubt realized, there must be mutual trust and a willingness to be vulnerable for relationships to work. And while it may take time to build or rebuild trust with some people in your life, it’s well worth it. Having strong social connections with others will improve your quality of life and lighten the burden of navigating your acromegaly journey.
How are you managing your different relationships as a person with acromegaly? Join us on social media to share your thoughts and ideas.
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Reference
Acromegaly Community, Voice of the Patient: Living with Acromegaly, October 20, 2021.