Nobody Talks About the Mental Health Impact of Living with Chronic Illness
Angela Brown is an award-winning author, chronic illness speaker, patient advocate, and peer mentor who uses her lived experience to raise awareness about invisible illness, pulmonary hypertension, and patient empowerment. She is passionate about helping others find their voice and advocate for themselves.
When people talk about chronic illness, the conversation often focuses on physical symptoms, medications, treatments, and medical appointments. While these are all important, there is another side of chronic illness that doesn't receive nearly enough attention: the impact on our mental and emotional well-being.
Living with a chronic illness affects far more than your physical health. It can change your relationships, your independence, your plans for the future, and the way you see yourself. It can bring loneliness, anxiety, grief, frustration, and moments when you wonder how much more you can manage.
I know this because I live it. I have pulmonary hypertension, a rare and serious condition that affects the blood vessels in the lungs and the right side of the heart. It took approximately four years of symptoms before I received my diagnosis. During that time, I experienced swollen legs, difficulty breathing, chest pain, and other symptoms that were not properly explained.
My experience has taught me that the emotional impact of chronic illness can be just as difficult to navigate as the physical symptoms. Yet it is often the part that people don't see.
When nobody believes you: The emotional impact of medical dismissal
One of the most difficult parts of my journey was trying to get answers. For years, I knew something wasn't right with my body. I was experiencing symptoms that were affecting my everyday life, but I struggled to get the answers I needed. My concerns were dismissed, and I was given explanations and diagnoses that did not account for what I was experiencing.
Eventually, I began questioning myself. Was I overreacting? Was I imagining things? Was it really all in my head? It was especially difficult when people close to me didn't understand what I was going through. Because I was already living with other chronic health conditions, some people questioned whether I was looking for another illness. I wasn't looking for another diagnosis. I was looking for answers.
Being dismissed by healthcare professionals and having others question your experience can take a serious emotional toll. You may begin to doubt your own judgment, lose confidence, and feel as though you have to prove that you are unwell.
Even after receiving my pulmonary hypertension diagnosis, I encountered comments suggesting that I shouldn't listen too closely to the doctors or that I might make myself believe I was sicker by thinking about it. But a diagnosis doesn't automatically make everyone understand.
Approximately two and a half years after my diagnosis, I still encounter people who don't know what pulmonary hypertension is, how serious it can be, or how it affects my everyday life.
The experience has taught me that being believed matters. Being listened to matters, and patients should never have to fight so hard just to have their symptoms taken seriously.
The loneliness nobody sees
Chronic illness can be incredibly lonely. You can be surrounded by family and friends and still feel completely alone because they don't understand what your body is going through.
They may see you sitting comfortably, smiling, or looking well, but they don't see the breathlessness, exhaustion, pain, or uncertainty that may be happening beneath the surface.
I have heard comments such as, “You don't look sick,” or “You look so much better.” I understand that these comments are often meant to be encouraging. But looking healthy doesn't necessarily mean feeling healthy. Many chronic illnesses are invisible, and what someone sees on the outside rarely tells the whole story.
There is also the loneliness that comes when your life changes and your relationships change with it. You may no longer be able to socialize as often, attend events, make spontaneous plans, or participate in activities you once enjoyed. Sometimes, invitations become less frequent because people assume you won't be able to attend.
Eventually, you may stop explaining why you can't go. You may withdraw because it becomes exhausting to keep saying no.
The hardest part is not always missing the event itself. It is feeling as though life is continuing around you while you are struggling to keep up.
The grief of losing the person you used to be
One aspect of chronic illness that is rarely discussed is grief. People often associate grief with losing someone they love, but there is another kind of grief that comes with losing parts of the life you once knew.
You may grieve the energy you used to have, the independence you once enjoyed, and the activities you no longer have the ability to do. You may grieve friendships, career opportunities, travel plans, and dreams that now seem out of reach.
You may even grieve the person you were before your diagnosis. For me, living with chronic illness has meant learning to adjust my expectations and accept that I cannot always do the things I once did. Some days, even ordinary activities require careful planning and energy management.
That adjustment isn't always easy. There can be frustration when your mind wants to do something, but your body simply cannot manage it. There can be sadness when you have to cancel plans or miss out on experiences that others take for granted.
Sometimes, you feel guilty because you know there are things to be grateful for, yet you still miss the life you had before. You can be grateful for the life you have and still grieve the life you lost. Both feelings can exist together.
The anxiety of living with the unknown
Living with a chronic illness often means living with uncertainty. There are medical appointments, tests, medications, and ongoing decisions about your health. You may worry about whether your condition is progressing, whether a new symptom is something serious, or what the next test result might reveal.
Even waiting for results can be emotionally exhausting. There is also the uncertainty of everyday life. You may wake up feeling reasonably well, only to find that your energy or symptoms change throughout the day. Making plans can become difficult because you don't know how you will feel when the time comes.
People sometimes assume that because someone is home, they are enjoying a break or having a relaxing day. But being home because your health limits what you can do is not a vacation.
I would give anything to be able to do some of the everyday things that other people don't have to think twice about. To make plans without worrying about whether I will have enough energy. To go out without having to consider how my body might respond. That uncertainty can create anxiety that is difficult to explain to someone who has never experienced it.
Turning my experience into advocacy: Giving others a voice
For the past two and a half years, I haven't just been living with pulmonary hypertension. I have also been advocating for people living with chronic illness and raising awareness about pulmonary hypertension.
My advocacy comes from my own experience. I know what it feels like to have symptoms, seek answers, and be dismissed. I know what it feels like to question yourself when the people around you don't believe something is wrong. I know how emotionally exhausting it can be to fight for a diagnosis while trying to manage your health. That is why I want others to understand that they have a voice.
You know your body and when something doesn't feel right. Speak up. Ask questions. Share your concerns. Seek further medical advice when necessary. If you feel your concerns aren't being addressed, continue advocating for yourself. You deserve to be heard, taken seriously, and treated with respect.
I also serve as a Peer Mentor with the Pulmonary Hypertension Association of Canada, supporting people who are newly diagnosed with pulmonary hypertension.
A diagnosis can be overwhelming, and there is so much to learn about navigating life with this condition. From understanding fluid restrictions and dietary considerations to adjusting to medications, appointments, and everyday lifestyle changes, having someone who understands the experience can make a difference.
I want newly diagnosed patients to know that they aren't alone and that there are people who understand what they're going through.
Another important part of my advocacy is raising awareness about pulmonary hypertension. It is a rare and potentially life-threatening disease, and its symptoms can sometimes be mistaken for other conditions. Symptoms such as breathlessness, fatigue, chest discomfort, and swelling in the legs deserve appropriate medical assessment.
I want the public to recognize that these symptoms should not be dismissed. I also want healthcare professionals to have greater awareness of pulmonary hypertension so that it can be considered when appropriate, investigated, and diagnosed sooner.
My journey has taught me that delayed diagnosis, feeling unheard, and navigating life with a serious chronic illness can have a profound emotional impact.
If sharing my story helps one person recognize their symptoms, encourages someone to seek answers, helps a newly diagnosed patient feel less alone, or reminds someone that their voice matters, then sharing my experience has purpose.
I cannot change the four years it took for me to receive my diagnosis. But I can use what I learned during those years to help make the journey a little less lonely for someone else.
We need to talk about the emotional side of chronic illness
Healthcare must look beyond physical symptoms. Of course, medical treatment, medications, and monitoring are essential. But people living with chronic illness also need emotional support. Their mental health should not be treated as an afterthought.
Sometimes, what a person needs most is someone who will listen without trying to fix everything. Someone who understands that a diagnosis can bring fear, uncertainty, and grief, even when treatment is available.
Access to mental health professionals, peer support groups, and other people who understand the challenges of chronic illness can make a meaningful difference.
Family members and friends also have an important role to play. Instead of assuming someone is doing well because they look well, ask how they are really feeling. Include them, even if they sometimes have to decline invitations. Understand that their limitations are real, even when you cannot see them. Most importantly, believe people when they tell you they are struggling.
Beyond the diagnosis
Living with chronic illness has changed my life in ways I never expected. It has challenged me physically, emotionally, and mentally. It has also taught me the importance of speaking up, finding support, and using my experiences to help others.
I want people to understand that chronic illness is not just about managing symptoms or taking medication. It is also about navigating the loneliness, grief, anxiety, and emotional changes that can come with a life you did not choose.
To those living with chronic illness, your feelings are valid. You are allowed to have difficult days. You are allowed to grieve what has changed. You are allowed to ask for help, set boundaries, and speak up when something doesn't feel right.
To the people supporting someone with a chronic illness, remember that what you see is not always what someone is experiencing.
We may look fine on the outside, but that doesn't mean we are fine on the inside. Your diagnosis may change your life, but it should never take away your voice.
Read more from Angela Brown
Angela Brown, Chronic Illness Speaker, Author, Peer Mentor & Advocate
Angela Brown is an award-winning author, chronic illness speaker, patient advocate, and peer mentor who is passionate about helping others navigate life with invisible illness. Living with pulmonary hypertension and other chronic health challenges has given her firsthand insight into the importance of self-advocacy, being heard, and finding your voice in healthcare. Through her speaking, writing, and advocacy work, Angela shares honest perspectives that encourage others to advocate for themselves and recognize that their experiences matter. She is also an ESL tutor and the founder of Little Voices English Club, where she helps children build confidence in English communication.
