“I have a chronic illness. Now what?”
I’ve been spending a ton of time on Instagram lately, connecting with the amazing spoonie community there. I often ask questions to increase engagement, and I’ve found a veritable treasure trove of information that I can’t wait to share with you every week!
A few months ago, I asked the question:
“What’s one piece of advice you would give to a new spoonie?”
Below are the helpful, well-thought-out answers I received.
1. Allow yourself to mourn your former life.
One of the most important things you can do early on in your diagnosis is take the time to mourn your former life.
Learning that you have a chronic illness and that you may not be able to accomplish the same goals you set for yourself years ago can be as startling and painful as learning of a sudden death.
Like mourning the loss of a loved one, you will go through the usual grieving stages:
You don’t have to go through this process alone. There are support groups online and in person that can help. You might also consider talking with a professional therapist during this critical time.
2. Connect with other people living with similar chronic illnesses.
If you don’t know it yet, there is a huge, and I mean HUGE chronic illness community online. Just type the word ‘spoonie’ into any search engine or look up the hashtag #spoonie on social media accounts.
Making connections with those who are living with similar chronic illnesses offers you a deeper level of support than you can get from someone in perfect health, no matter how well-intended that person may be.
3. Change your mindset and make new goals surrounding that mindset.
Another important thing to remember as a newly diagnosed spoonie is that there will be a new normal to adjust to. Remember, this is not an end to your life, this is a detour. This means you can still accomplish goals and fulfill your heart’s desires, you’ll just have to blaze a new trail to those goals and desires.
4. Keep track of physical and emotional changes via journal or app.
Fatigue, brain fog, and pain can make it difficult to keep a mental note of how you feel on a daily basis. Keep a journal or download an app to keep track of your flares, food triggers, emotions, etc.
As you get to know your body, you’ll have a better idea of what makes you feel better, what makes you feel worse, when you have bursts of energy, and when you need to take a nap!
I highly recommend Daylio. It’s a free app that I’ve been using for months, and, with my incredibly poor memory, it’s been invaluable to me.
5. Don’t push your friends and family away.
It’s very common for newly-diagnosed spoonies to push everyone away. I completely understand. I did the exact same thing. As a matter of fact, I still do. I isolate to keep my stability, deal with sensory overload (I’m on the autism spectrum), and “protect” others from the symptoms of my chronic illnesses when they get particularly bad.
To me, it’s as natural as breathing, so to advise you not to push your friends and family away goes against my own natural instincts. However, it’s very good advice that was given to me by one of my amazing linewalkers on Instagram.
True, friends and family may not fully understand what you’re going through or how you’re feeling, but they are your biggest supporters. Plus, and this is an important one, the more time you spend with them, the more likely there are to feel connected to you and become familiar with the symptoms of your illness.
It’s more difficult for someone to claim you’re “making it up” when they physically see what you’re going through on a regular basis.
6. Learn to say “No” without explaining yourself.
“No” is the most important word a person with a chronic illness can use. If you’re the type who is accustomed to taking on too much, it may be very difficult to delegate tasks, trust others, and say “no” to those you care about.
In the long run, though, saying “yes” to all the things you used to will only bite you in the butt, because you might not be able to complete the task as requested (or even remember to do it), and then you’ll feel guilty, exhausted, and maybe even resentful towards the people who asked.
You don’t have to explain yourself all the time, either. A simple, “I’m sorry, I can’t do that” should suffice.
People may be irritated or offended at first, but if they know you have a chronic illness and they know you as a person, they’ll adjust.
7. Research your own chronic illness.
I can’t stress this one enough. Research your own illness! Dealing with the conventional medical community can be like navigating a minefield. You have to be informed and on guard.
Most conventional doctors are not taught nutrition and the mind-body connection. They also have a rather horrible habit of downplaying symptoms in patients with chronic illness, especially women.
So, stay up to date, be informed, and be your own best advocate!
Also, if you ever have a doctor that takes issue with you doing your own research, find another doctor. That’s a sign of egotism on their part, and that’s the last thing you need when you’re at your most vulnerable.
8. Be more mindful and in the moment.
Your life has changed, and, while that can be difficult to adjust to, it will be easier to handle if you stay mindful and live in the moment.
For example, instead of trying to figure out how you’re going to have the energy to go to a wedding in three months, focus your attention on just the next three days.
If necessary, the next three hours or three minutes, even. Breaking life down into bite-sized chunks is an excellent way to reduce anxiety and feelings of overwhelm.
Also, instead of thinking, “When I get better, I will…” say, “On a day I feel better, I will…”
This small change in your thinking can help you feel more motivated and positive.
9. Rest and pace yourself even when it’s hard.
Ah, pacing. What’s that? If you’re anything like me, you go and go and go until you burn out and end up in bed for days. Unless you’re on an actual deadline, force yourself to take breaks in between activities.
- Work on a project, take a break (rest, meditate, nap, watch a movie), and then go back to your project.
- Buy your groceries one day, cook the next.
- Write an article in the morning, edit it at night.
10. Appreciate the little things.
When you’re living in a 9 to 5 world, trying to balance career, family, and a social life, it can be hard to remember to appreciate the little things.
This is one of the unexpected advantages of living with a chronic illness: You have now transitioned from a typical human pace to nature’s pace.
Raindrops, flowers, insects, squirrels, the scent of a candle, the feel of your pet’s fur, and the delicious warmth of sinking into a hot bath—Those are all yours now, and they are all precious.
11. Put yourself first.
When you’re newly diagnosed with a chronic illness, it can be very difficult to put yourself first, especially if you’re not used to it.
Remember, your abilities have changed. Expecting that you’ll be able to go at the same pace you used to, helping everyone with everything, and taking on task after task is not only unrealistic, it’s bad for your health.
Put yourself first. It may sound selfish, but it isn’t. Recharging your own batteries so that you have enough energy for yourself and others is one of the best things you can do for yourself and those who count on you.
12. Have an advocate by your side.
Whenever possible, take another person with you as an advocate and support. Medical staff are far less likely to be dismissive or take advantage of their patients when there’s someone else around.
I know this sounds scary, but some doctors are complete and total jerks. You need to be aware of this and protect yourself whenever necessary.
These are some of the things I wish I’d known when I was diagnosed in my early 20s. It would have saved me a LOT of grief!
What about you? What advice would you give to someone who is newly diagnosed with a chronic illness? What is the best advice you’ve received?
Share in the comments below!