"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 that time has sped up and that your life is spinning out of control. So, I will share with you my top 5 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 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 not only for moral support can be extremely helpful as it is an extra pair of ears. I find with family members they can help you become more open, as there may be times when you say to the doctor things are fine leading to your family member being like "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 with no doubt you’ll be willing to endure whatever that pathway entails to become cured, however unfortunately, for some 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 that will help manage and control your condition or the symptoms that you’re experiencing. Most of the time this will be under a lot of trial and error as different medications will produce different side effects and 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: Chanel your inner researcher
Many people say don’t go online to look up symptoms or your condition, but in this day and age it is the first place to go to just 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 point to start is the charity of your condition who will be able to tell you about what is being done as well as lead you to trusted sources of information.
Step 4: Pros and Cons
Making a pros and cons list of treatment options can be a really helpful way in deciding which is best for you. You may want to consider what the side effects of a certain treatment is, 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 don’t have to worry about being charged for receiving treatment, but some who do have private healthcare and other countries that don’t offer free healthcare the financial cost of treatment can be a hug deciding factor. You may want to also consider the pros and cons would be on your general health and the type of quality of life you will have.
Step 5: Be your own boss
One thing that 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 on deciding 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 on my treatment pathway and so changed consultants and haven’t looked back since.
There you have it, my top 5 tips on how to help you in decision making on the management of your condition. The one thing that I found useful when diagnosed with Crohn’s disease was to be able to take my time in deciding what to have and when to have treatment. I was luckily enough to be able to do this, and I understand that for others – who may be suffering from Crohn’s or other chronic illnesses - may not have this luxury due to the nature and unpredictability of their condition.
As always, I’m happy to answer any questions and more tips.