If you struggle with a chronic illness, you may find yourself frustrated, depressed and feeling isolated. The fear of the unknown coupled with the exhaustion of dealing with daily symptoms can leave you wanting to give up. I want you to know it is possible to thrive with a chronic illness.
And I'm not saying that as a healthy person. 🙂 I've been dealing with a chronic illness for more than half of my life.
I was diagnosed with lupus 20+ years ago and have had multiple other autoimmune diagnoses that have been piled on top of that SLE diagnosis. I've had TIAs (mini-strokes), soldiered through a variety of treatments (including chemo and heavy doses of steroids) and experienced more broken bones than most car wreck victims (thanks to all those years of steroid use). As I write this, I have 4 broken bones in my foot and have been walking with a walker for the past month.
Most people experience a minor illness from time to time. And while a minor illness can be a major bummer, living with chronic illness on a daily basis can make it next to impossible to keep your spirits up. You might have trouble doing the things that made you happy in the past or getting out of bed in the morning.
Thriving with chronic illness
Does your chronic illness keep you in bed all day?
Tired of everyone telling you, “You don't look sick”?
Feeling like the world is crumbling around you and that your illness dominates every aspect of life that it touches?
It's hard to fight back against something so powerful – and oftentimes invisible to everyone else. But don't give up!
There are many ways for people with a chronic illness to still be happy and successful, you just have to find what works best for YOU.
Be mindful and present.
Take note of your struggles. Are you experiencing pain, fatigue, grief? In the early days, I kept a journal of my symptoms. Journaling your symptoms can give you a way to express your feelings without feeling like you're complaining to those around you.
Take care of yourself, but don't let the symptoms take over. You're not alone in this! Sometimes finding others with a shared experience is helpful because you can recognize that your struggles are part of your journey but that your journey isn't over. Also, keep track of your accomplishments. It can be encouraging to see what you've been able to achieve despite your symptoms.
Whatever you do, don’t let your diagnosis define you.
You are not your illness. You are a whole, individual human being who deserves love, happiness, and anything else your heart desires. Be patient with yourself.
Figure out your triggers and get ahead of them.
I have found that it's extremely helpful to have an action plan. Do you know what causes an increase in symptoms? Understanding your triggers can be a game changer when it comes to combating illness.
Heat, over-exertion, stress, weather changes, even certain foods and types of food can all be triggers for people who live with chronic illness. It will take some time to figure out all of your triggers. Until you do, jot down your symptoms as you notice them and then make a list of everything you've eaten, what the weather is like, and anything else that may have contributed to your symptom. Once you've figured out what your triggers are, you can brainstorm ways to avoid them.
For example, if your trigger is heat, there are SO many products out there that can help: cooling mats, cooling towels, handheld fans, cooling vests, just to name a few. Get online and do some shopping or talk to others and get recommendations. When you find what works for you, you’ll be prepared and will know exactly what to do in future to avoid making your struggles worse.
Sometimes getting ahead of triggers requires major life adjustments. Don't be afraid to make big changes that will have big results.
Cold is a big trigger for me and I spent many miserable winters in agony. A few years ago we made the decision to move to a warmer climate to help me better manage my chronic illness. It has been literally life-changing. While I still have bad days, my good days outweigh my bad days and I'm able to do more than I thought possible.
Use your experience to raise awareness and empower others.
Once you’ve got a handle on your triggers, why not use your experience to help others? I’m sure you can recall the feeling of being alone in your challenges. Imagine being the comfort for someone else at the beginning of this process. There are many ways you can encourage others on their journey:
- Put your thoughts and experiences into a blog which you share in support groups
- Fundraising is an amazing way to raise awareness. Be creative and get your friends involved
- Be available and approachable
- If you have any kind of treatment in a hospital setting, talk to people in the waiting room, be open and honest and listen to others. Even if you aren’t facing the same obstacles, it can still be comforting to just have someone who will listen without judgement
Do your research.
Have you noticed a new symptom? Odds are you aren't the only person in the world who has experienced it (although sometimes it does feel that way). Research different coping strategies, holistic practices, treatment options and natural remedies.
While I'm a big proponent of research, please remember that the internet is filled with information that may not be helpful to you. If research adds to your stress level and convinces you that things are way worse than they actually are, then don't do this. Every person is different and so research will have different effects on different people.
Connect with others
While there are many downsides to social media, one of the big upsides is that it makes it really easy to connect with others who share your diagnosis. Facebook groups are awesome for this. Reach out and discuss what’s happening to you. Knowing that you’re not alone can really bring a sense of relief and having a space to vent is so useful when you’re having a rough time.
Move your body!
Low impact exercise keeps those with chronic illness moving and flexible, and it’s even a great option for reducing and controlling pain. You have to have a certain level of self discipline and motivation to get up and at it, regardless. Use your better days to your advantage, and move around a bit extra.
A lot of options for simple routines are available for free on YouTube, so you can do them from the comfort of your own home. Yoga, swimming, going for a walk, stretching, or light pilates routines are just among the many options you have.
Get some good quality sleep.
We all know how important sleep is. I regularly tell my children that “the difference between hope and despair is often a good night's sleep.” But sometimes chronic illnesses can make it difficult to get the rest you need and deserve. You have to take care of yourself; your body needs a break from everything life throws at it on any given day.
Make sure bedtime feels as comfortable as possible by surrounding yourself with calming colors, decorations, or anything else that reminds you of home while also giving off comforting vibes for an awesome night's sleep.
Meditation can really help to calm your mind in preparation for rest, and so can coloring, reading books, stretching, and any other calming activity that you particularly enjoy. Sometimes the symptoms you experience can make it difficult to settle when you need to sleep, but having a relaxing nightly routine may be able to ease you into rest more effectively.
If you really struggle to get good quality sleep, talk to your medical team – that’s what they’re there for! Perhaps they can offer you therapy, recommend some useful tips, supplements, or medication that can help you to sleep better. Don’t be afraid to ask for help when you need it.
Speak with your employer.
If you work and you’re struggling day-to-day, don’t wait until your health starts deteriorating before you speak up. You may be surprised at how understanding your employer can be. Once you’ve opened up and been honest, they can work with you to figure out a routine or schedule that works best for you. This isn’t always the case, so always know your rights when approaching your employer and keep HR on speed dial if necessary!
A lot of people with chronic illness find that they can no longer continue to work a full time job, and that’s okay. But for those who are still able to work, don’t over-exert yourself when it’s not necessary. You didn’t choose to have this condition, and your determination to carry on living a ‘normal’ life is commendable. However, if there are accommodations that make things easier for you, why not take advantage of them? Again, HR can be a great resource – especially if your employer is not accommodating your needs.
Keep on keeping on!
When you get a diagnosis of a life-long condition, it can be easy to feel overwhelmed. You don't need to figure out the rest of your life…just take it day by day and week by week. Establish a strong support system to rely on during the tougher times.
And no matter what, keep in mind that this is your life and although you’ve been thrown a major curveball, you’re going to live it to the fullest! Choose to thrive. Research your diagnosis, connect with others, look into self management options, and never be hesitant to ask for help.
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