The diagnosis is not the end of your story.
Nervously you sat in the quiet waiting room. You watched as other patients came and went, some with smiles, many without. Fear held your chest tight as you wondered if you could survive a chronic illness diagnosis.
Before long, your name was called. Then you got to wait again, this time in a patient room until the doctor finally arrived.
Wasting no time, the doctor quickly told you what all the tests and labs revealed. What you knew in your gut was right. You have a chronic illness. Devastated, you left the office fighting back tears.
What would happen next? Would you continue to have any quality of life? How could you find hope again?
This post contains five ways to help you survive chronic illness and to live your best life.
Remember, It’s Just the Beginning
Finally getting the news that you are indeed chronically sick can feel like the end of the road. After all, if you are like me, it may have taken you years to get there.
It’s only natural to fall apart for a while. Let yourself cry and grieve. You are experiencing a loss. Just don’t take too long.
Whatever the diagnosis, there are always ways you can improve your quality of life. Now that you have clearly identified the enemy, it’s time to put in place a battle plan.
Yes, your life may be forever altered, but it’s not over. A new chapter is just beginning.
How can you survive a chronic illness diagnosis? Here are five tips that will help.
1. Learn What You Can
Knowledge is indeed power. There is no greater truth when it comes to fighting this type of battle.
Read what you can on the subject. Find books or blogs to follow. Talk to friends or relatives who have experience with the same condition.
The best way to fight your enemy is to know your enemy.
Sometimes this is a challenge. When I was diagnosed with Familial Mediterranean Fever (FMF), I scoured Amazon and the internet looking for answers. Sadly, there were very few, and many of the websites I did find were not in English. When I translated the content with Google’s help, often the resulting text was unintelligible.
That’s a big reason why I discuss the disease so frequently in my posts. I don’t know much, but I want to share what little I’ve learned with others who are looking for answers.
Dig deep if you have to, but learn as much as you can about your diagnosis.
2. Find Your Community
The next thing you want to do is to find a community. You may prefer to call it a support system, a care team, or a trusted circle of friends.
Whatever you call it, you are going to need one. There will be bad days. Probably many bad days. You are going to need all the support you can get.
Find a support group in your area if you can find one. Often they can be found by doing an internet search or by posting a question on social media.
With rare diseases, like FMF, you may not find any groups locally. In fact, in my case, there is no one I know with the condition. Most people, including my doctors, never heard of the disorder before I received my diagnosis.
The right tribe will help you to be brave in facing what comes next with your situation.
What Helps Me to Survive Chronic Illness
Through much searching, I was able to find a few sources of comfort. Here are a couple of sites that offered hope and validation:
In addition, I ventured on to Facebook. (If you know me, you know that it’s my least favorite social media platform.) What I found amazed me.
There are Facebook groups for almost every condition you can think of, including FMF.
Again, I found three.
- Autoinflammatory Diseases
- Familial Mediterranean Fever (FMF)
- Familial Mediterranean Fever (FMF) (Same name, but a different group.)
Enter the name of your condition in the search box on Facebook and see what comes up. Don’t be discouraged if you see “Closed Group” in the description. Go ahead and click on the “Join Group” button, and in most cases, you will be added in a few days.
The Value of Groups
Whether it’s a local support group or one online, the value of being part of one is the support and validation you get.
Are you experiencing a strange symptom? Most likely someone in the group has had it before, and they may have tips to help you alleviate it.
Additionally, finding a tribe of similar souls can give you a wealth of information. No one knows a condition better than someone who is living with it. People in your group will be happy to share what things have worked for them and which have been a complete waste of time.
3. Keep a Journal
The next thing you want to do to survive chronic illness is to keep a journal. Yes, even you guys out there.
If your mind immediately went to thoughts of a teenage girl (or boy) writing about their latest crush, put that thought out of your mind. While you can write about those things, a journal is actually a valuable tool in your fight for a quality life.
The key is to write every day and to include important things. How are you feeling? What did you do? What have you eaten? Did you sleep last night? What is your temperature?
You get the picture.
It won’t happen overnight, but in time you will start to see trends. Oh, every time I do that, then this happens. Those trends will help you to accentuate the good and lessen the bad.
4. Be Open and Honest
Here’s a funny story. A while ago, a group of my friends and I were sitting around talking. Somehow, we got on the subject of what single word could be used to describe us. We went around the room and each person shared a word they would use to describe the person in the hot seat.
When it was my turn, I was surprised at some of the things my friends thought of me but confused why no one mentioned the word “honest.” I value my honesty and the fact that I’m the type of friend that will tell you the truth even when it’s not what you want to hear.
Yep, I’m the friend that will tell you that outfit looks awful on you. You should go home and burn it.
Perplexed, I asked the group why no one used the word. One of my friends spoke up, “Because the description had to be one word. You are not just honest, you are brutally honest.”
Needless to say, everyone had a good laugh at my expense. It’s okay, I’m fine with laughing at myself.
But Was I Really?
While my friends knew of and valued my honesty, it was very difficult for me to be so with my medical care team.
When you ask how I’m doing, I almost always say, “Good.” I don’t even think about it. It’s part of not wanting to be identified by only my illnesses.
The problem was when I went to see a doctor, I kept the same brave face on. As a result, the symptoms that were making every day nearly unbearable were not getting the attention they needed.
It might be hard for you, but be forthright and open with your caregivers. Tell them exactly what symptoms you are having, what emotions you are feeling, and what life is really like for you right now.
This type of communication is crucial in being able to assist you to survive a chronic illness. The only way anyone can really help is if they have a true picture of what is going on.
5. Ask For Help
Last, but certainly not least, don’t be afraid to ask for help.
I’ll be candid, this one I am constantly working on. I am a very independent person, and if I can’t do something myself, then usually I leave it undone.
That is a terrible trait. Don’t be like me.
This is not to say that you should run your family and friends ragged with doing things for you, but rather to speak up when you really need them.
For me, the FMF sometimes causes intense pain. When that pain settles in my knee or hip, driving becomes difficult. Add to that, my other constant companion, Bipolar Disorder, likes to take those high-pain days and throw a bunch of anxiety into the mix, making driving that much more difficult.
By now, you have some idea of what things you can and can’t do. When needed, reach out to someone and ask for the help you deserve.
Add Your Own Tips
In conclusion, let’s review briefly. How can you live your best life and survive chronic illness?
Learn as much as you can about your diagnosis, and create a supportive tribe around you. Start a journal and be open and honest with yourself and your caregivers about the things you are feeling and experiencing. Ask for help when you need it.
This list includes only five of the things I have found to be beneficial in my fight with Familial Mediterranean Fever and Bipolar Disorder. What tips have you discovered that are helping you to live your best life with chronic illness? Please share them in the comments below.
Next up, be sure to read the post: 4 Things a Chronic Illness Teaches You
There will be some dark days. Depth of Darkness is a poem video about how those days feel.