5 Decision-Making Tips to Help You Take the Next Step in Managing Your Illness

“At some point, you have to make a decision. Boundaries don’t keep other people out, they fence you in. Life is messy, that’s how we’re made. So, you can waste your life drawing lines or you can live your life crossing them. But there are some lines that are way too dangerous to cross. Here’s what I know. If you’re willing to throw caution to the wind and take a chance, the view from the other side… is spectacular.” – Meredith Grey

If you haven’t guessed it from the use of a quote from “Grey’s Anatomy,” I am a massive fan of the show. But the quote does resonate some truth. How many times have you been in a situation where you’ve said, “if only I did this differently” or “I wish I didn’t rush that decision”?

When you’re diagnosed with a chronic illness, it can sometimes feel like time has sped up and your life is spinning out of control. So, I will share with you my top five tips that will hopefully help in deciding your next steps in managing your condition.

Step 1: Speak Up

Firstly, decide on what you want to know. It can be useful to write everything down before you see your doctor as sometimes, when keeping a list in your head, you tend to leave the appointment saying, “oh I forgot to ask about that.” Bringing a pen and notepad with you as well to write down what the doctor says can be useful as at times you are overloaded with so much information it can be hard to remember all that has been said.

Having a friend or family member come along with you to appointments can be extremely helpful not only for moral support, but as an extra pair of ears. I find family members can help you be more open, as there may be times when you tell the doctor that things are fine, leading your family member to say, “Actually, no they’re not…”

Discuss with your doctor what treatment options are available and what the realistic expectations are of those treatments to help manage your symptoms and improve your quality of life. Discuss what is to be expected from treatment and always keep the focus on you. It’s your health, it’s your life and body, you know you best. It’s primarily your decision on if you feel comfortable enough to go through a certain treatment or procedure.

Step 2: Set a Target

Different conditions are treated differently and have different outcomes. Decide what you want to achieve from having treatment. If there is a cure then you’ll likely be willing to endure whatever that pathway entails to become cured. Unfortunately, for chronic conditions the “cure” option is taken off the table. So, what’s the next best thing if there isn’t a cure? The goal could be to find a way to help manage and control your condition or the symptoms you’re experiencing. Most of the time this will involve a lot of trial and error as different medications can produce different side effects. Ultimately, at the end of the day, it is left for you to decide what you want the outcome of treatment to be, while setting realistic expectations.

Step 3: Channel Your Inner Researcher

Many people say not to go online to look up symptoms or your condition, but in this day and age it is the first place many look out of convenience. What I would say when going online to look up treatment options or the current research that is being done on your condition is to just be careful which sites you are looking at. If in doubt, a good place to start is the charity of your condition which will be able to tell you what is being done as well as lead you to trusted sources of information.

Step 4: Investigate the Pros and Cons

Making a pros and cons list of treatment options can be a really helpful way to decide which is best for you. You may want to consider what the side effects of a certain treatment may be, what it will cost you and if insurance companies will cover your treatment. In the UK we are lucky to have the NHS and so we don’t have to worry about being charged for receiving treatment, but some have private healthcare, and in other countries that don’t offer free healthcare the financial cost of treatment can be a huge deciding factor. You may want to also consider the pros and cons of each treatment on your general health and the quality of life you will have.

Step 5: Be Your Own Boss

One thing I have found very useful is keeping track of every consultation or procedure I have had. This means asking for copies of your medical records from consultation reports to blood tests. Take your time when deciding whether to commit to something and don’t be afraid to seek a second opinion. I did exactly this when I was first diagnosed as I wasn’t entirely convinced about my treatment pathway. I changed consultants and haven’t looked back since.

There you have it, my top five tips for making decisions about the management of your condition. The one thing I found useful when diagnosed with Crohn’s disease was being able to take my time in deciding which treatment to pursue, and when.

I was lucky enough to be able to do this, and I understand that others – who may have Crohn’s or other chronic illnesses – may not have this luxury due to the nature and unpredictability of their condition. I’m always happy to answer any questions and provide more tips.