By Becca Essig
My doctor just told me I’m sick.
We’re never really prepared to hear that we have a life-threatening illness, and we all typically react in our own unique way. After finding out that you’re sick, you might feel a wind range of emotions like being:
Some emotions you feel might not be on this list, but the important thing to remember is that you aren’t alone. Everyone digests serious information in a different way and at a different pace, but we all feel them somehow.
So, what now?
There is a lot of information available online for helping to handle a serious illness. While some people want to collect as much information as possible as quickly as possible, others may need more time to process the meaning of their diagnosis and instead prefer just enough information to make the important immediate decisions. Please look at the links and information included at your own pace and don’t be afraid to ask questions. Even if you aren’t ready to research right now, just know help is available.
The following is a summary of some basic information on how to handle life with a chronic illness. It is by no means a complete source, and further independent research is highly recommended. This information is meant to help start the conversation, and it is important to remember that everyone is different so some advice may be more helpful than others. Also, always remember to contact professionals for help and to never ignore your doctor’s advice because of something online.
Coping with Chronic
Coping with a chronic illness is an iterative process meaning it takes a lot of trial and error to find what works for you. The downside is that no one (not even other diagnosed people) knows exactly what you’re going through. However the good news is that there are a lot of people with similar experiences available and willing to help.
- Find a group to talk about what you’re going through. Support groups are not always like what they show on TV and in movies. A lot of resources with wide levels of organization are available either in person or online. A great approach is to find support groups on social media networks because a lot of the members are potentially taking similar medicine, having similar procedures, and feeling similar emotions and challenges (example: on Facebook there is a group called Wegener’s Granulomatosis composed of over 1,000 WG patients and family/friends). Something to be cautious about is to always remember that people in the support groups may have done a lot of research on a topic, but they are neither experts nor doctors. Always consult your doctor before trying anything recommended online.
- Maintain normalcy. One of the most difficult parts of being sick with a chronic illness is how it changes everything about your life. Although much of your routine will be changing, try to keep as many parts as consistent as possible. This could be as simple as maintaining hobbies, continuing to watch your favorite show every week with your family, taking your dog for walks, meeting friends for coffee, or reading a book before bed.
- Reduce Stress. There are a lot of methods for treating stress. Finding a few different methods that work for you is crucial to handling the added stress of a chronic illness. Not only does being sick add stress, but stress can actually cause you to get sicker, so management is key. A few methods to research are breathing exercises and meditation which are great because they involve no added medicine or monetary demands.
Cleveland Clinic Article: Coping with Chronic Illnesses
American Heart Association: Four Ways to Deal with Stress
HelpGuide: Stress Management
Dealing with Doctors
One of the side effects of having a chronic illness is having to go to a lot of doctor’s appointments. It’s very important to develop a comfortable relationship with whichever doctors you use in order to create trust and confidence. A doctor you don’t feel comfortable with will not be able to provide you with the best care even if they are very knowledgeable. Dealing with doctors gets easier with practice, but here are a few tips towards making it easier.
- Make sure to find at least one doctor to take the lead. When dealing with a chronic condition, it is usually best to find a certain doctor who you feel comfortable with, who is familiar with your condition, and who you trust to act as the primary physician. This doctor can take the lead with making key decisions regarding your care, and can also help coordinate with the other specialists you will likely see ensuring that you get the best level of care possible. The Vasculitis Foundation maintains a list of specialists from around the world that may be helpful in choosing a primary doctor.
- Keep a list for questions that come up before you go into an appointment. Doctors typically try to make appointments as fast as possible, so that they can see more patients throughout the day. It’s very easy to forget questions you may have or get sidetracked with exams so concerns get pushed out of mind. Writing down questions and concerns as you think of them will help you remember to ask them once you are in your appointment.
- Maintain a binder with important medical information and forms. Whether it’s prescription scripts, medical lab letters, test results, or insurance forms, being sick comes with a lot of paperwork. Although a lot of forms are kept online now, it’s good to get in the habit of keeping photo copies (or originals if possible) of all medical forms in a binder for future reference. Not only will this help if you have difficulties with the insurance company, but any time you see a new doctor they may want to see your medical history. It’s important to remember to keep the binder in a safe place, because it will contain a lot of personal information.
- Take an active role in your treatment. In the early stages of treatment it’s very easy to feel like all decisions are being made for you and doctors only talk about you instead of to you. It can be very difficult to overcome this, but taking an active role in your treatment is a big step towards achieving this goal. Remember, ask questions and tell people how you are feeling.
- Don’t ignore your body. Your body will try to tell you something is wrong. It’s important to not ignore new aches and pains or other changes in your body because they may be a sign that something is wrong with either your illness or your treatment. You may feel bad about calling the doctor or making an appointment to ask for help, but always remember that it’s their job to help you manage your illness. A good doctor will not ignore you or make you feel crazy for reporting changes in your body.
Vasculitis Foundation’s List of VF Medical Consultants
Sick and in School
The reality of being sick is that you may have to miss a lot of school because you’re either not feeling well, attending doctor’s appointments, or possibly in the hospital. This can make it difficult to perform well on homework, tests, and projects. Fortunately, there are many resources available online to help with this as well as a few tips.
- Communicate with School Officials. Talk about your illness with school officials and teachers, so they are aware of your situation. They can’t help you if they don’t know there is a problem.
- Create a plan of action. Develop a plan with the school for absences, days you don’t feel well, and other accommodations you may need.
- Don’t be afraid of talking. Make sure to communicate your feelings and take an active role in your management plan.
- Keep at it. Don’t get discouraged if it takes you longer to complete tasks than other students.
Most discussions with school officials will take place with a parental guardian unless you are 18 years or older. Even if you are over age, you may want to think about having a support person present to help facilitate discussions.
Better Health Channel: School Students and Chronic Illness
The Royal Children’s Hospital Melbourne: Health conditions, chronic illness, and school
Friends and Family
Even though it’s your illness, your treatment, and your doctor’s appointments, your family and friends are going through a transition too and also have an adjustment to make. It won’t be easy for them to have a loved one sick, so speaking with them about what they’re going through is important to help avoid added stress and possible misunderstanding.
- Start the conversation. Be honest and open with them about what you’re going through and what you need from them.
- Get them talking. Ask them how they are feeling.
- It takes some time. Give them time to adjust to the new situation.
- Sometimes outside help is needed. Suggest they seek professional help with coping if you think they might benefit.
How to Cope with Pain: Help Your Family Cope with Your Chronic Illness
American Association for Marriage and Family Therapy: Chronic Illness
University of Michigan: Children with Chronic Conditions
If there is a topic not covered here, a good way to research coping with a chronic illness is to search for articles not only about your specific illness but chronic illness in general (e.g. cancer, diabetes). Some suggested searches are included below to start you off:
- Dealing with chronic illness as a child
- Coping with a chronic illness
- Coping with cancer
- Stress management techniques
- Chronic illness in school
Always feel empowered to ask questions and remember – there are resources (both reading and people) available for when you need them.