A diagnosis of a chronic illness brings significant changes to many areas of life. While the journey of learning to live with a condition looks different for everyone, the importance of support is universal.
Support can and should take many different forms. New physical and mental health needs are both common when navigating a chronic condition, and there are resources to draw on for both facets of your wellness.
We encourage you to think broadly in building your support system, even when focusing more specifically on your physical or mental health. In the case of physical health, specialists like diabetes educators can supplement a provider’s care with more personalized guidance. And with mental health, different forms of support may be necessary to address the various ways that a diagnosis affects you individually as well as your relationships.
Here are some suggestions to help you build a strong support system after a chronic illness diagnosis.
Many chronic illnesses require medical care from a specialist with the expertise to address specific symptoms rather than a primary care physician. Medical specializations for chronic conditions include the following.
A pulmonologist specializes in the treatment of respiratory conditions including chronic obstructive pulmonary disease (COPD).
An endocrinologist specializes in the treatment of endocrine disorders including diabetes.
A rheumatologist specializes in the treatment of inflammatory autoimmune diseases including rheumatoid arthritis and lupus.
A gastroenterologist specializes in the treatment of digestive health conditions including celiac disease and inflammatory bowel disease.
A neurologist specializes in the treatment of diseases of the brain, spinal cord, and nervous system including dementia, Parkinson’s disease, and epilepsy.
Your primary care provider can help you make sure you’re seeing the right specialist for your diagnosis. In some cases, they may have the necessary expertise to treat your condition themselves. For example, if a primary care provider is board-certified in infectious diseases and internal medicine, they may be able to oversee antiretroviral therapy treatment for HIV.
There are many possible ways to look for a specialist. You can ask your primary care provider for referrals, contact your insurance company, or reach out to others you know with the same condition. If you don’t know many people affected by your illness, joining a support group can be a great way to build connections and get recommendations.
Many of the factors that people consider when looking for a primary care physician — communication style, for instance — are also relevant to finding a specialist for treatment of a chronic condition. How comfortable you feel around your provider can significantly affect your experience of living with an illness. Facing a diagnosis head-on requires you to feel informed, and to feel informed, you need an open dialogue with your medical team.
Credentials and experience
A provider’s background and training is particularly important when looking for a specialist, since treatment is often more complex. How many years they’ve been practicing can be an indicator of experience, but remember that it’s just one metric. Depending on your needs, you may be well served by working with a physician in the middle of their career.
Other factors that reflect a provider’s qualifications include research interests, and active involvement in research, and their affiliation with organizations related to their field. You may also consider where they completed residency and fellowship training — some hospitals and institutes are known for certain medical specialties.
Depending on your specific diagnosis, it may be important to look for a provider who is affiliated with a specific hospital. For example, more advanced COPD can cause flare-ups, or periods of intensified symptoms, which in some cases may require treatment in a hospital setting.
You may encounter treatment-related decisions that depend on personal preference. For example, some people who experience chronic pain as a result of their illness want to explore non-pharmacological options, or ways to manage pain without medication. If that’s of interest to you, look for a provider whose care philosophy aligns with your needs and views.
Other healthcare professionals
You may benefit from working with specialized healthcare professionals in addition to your medical team. Diabetes educators are professionally certified to coach individuals living with the condition. They offer support for numerous aspects of diabetes management, from insulin administration to insurance navigation and lifestyle changes.
Similarly, registered dietitian nutritionists who specialize in COPD can help you make dietary changes as part of treatment for the condition. (Since food affects your breathing, people with COPD are typically advised to consume more fats while reducing their intake of carbohydrates.)
Friends and family
Building a support system often involves asking for more help from your friends and family. Since stress management is part of navigating a chronic illness, look for opportunities to take responsibilities off of your plate. Communicate what you need as specifically as possible, and remember that people are ready to help.
You may find that you have less energy to focus on others. Prioritize relationships with supportive people who are sensitive to what you’re experiencing, and whom you want with you on this journey — it’s your decision who you share personal health details with.
Chronic illnesses can bring shifts in identity as you make changes to your routine and lean more heavily on others. Stress is common, too, as a diagnosis often comes with much uncertainty. For these reasons and others, your diagnosis may affect your mental health. In fact, some studies have found that living with a chronic condition increases a person’s risk of depression.
Therapy offers the support you need to process the emotional experience of a diagnosis. For many people, individual counseling provides a safe space to openly share their feelings and concerns related to illness. Many therapists have special training to support you in coping with a chronic illness, so look for this expertise as you search for the right practitioner.
If you have kids, a therapist can also support you in sharing your diagnosis with them in age-appropriate ways. If you are concerned about how your diagnosis has affected the entire family unit and your relationships, family and/or couples therapy may help you navigate the changes together.
Community support and peer groups
There’s no substitute for support from those who have been in your shoes and faced the same challenges. Peer-led support groups give you the opportunity to express your feelings to people who have firsthand experience of your condition. They can also share the coping strategies they’ve found most helpful.
As a starting point, look for a nonprofit related to your specific diagnosis. Many organizations offer both in-person and virtual groups, so connecting with others is not confined to geography.
Choose the right pharmacy
One final component of a strong support system: a reliable pharmacy partner. Our pharmacists are here with information and answers, even during nights and weekends, and the Alto app gives you control and convenience in managing your medications, with auto refills, medication bundling, and custom dosing reminders.
This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition.