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Making Plans for the Future with Chronic Illness

How Do You Plan for the Future When You Can't Even Plan for Tomorrow?

One of the things I have learned from having Crohn’s disease and also my rare disease, Chronic Intestinal Pseudo Obstruction, is to be prepared to change my plans and goals. Making plans with a chronic illness means you have to be a lot more flexible with your plans for the future. Or at least I do anyway, but many of you have expressed the same sentiments. I have had many fears that have kept me worried about what my future will be like or have hindered me in setting goals for myself. Some of these fears have been:

Will I ever stop crapping my pants at the most inopportune and embarrassing times (is there ever a good time? NO).

Will I have to have more surgeries? 

What if my whole life revolves around hospital stays? 

Will I ever feel good again? 

How many scars will I end up with? 

Will I have a permanent ostomy one day? 

What if my medications give me some horrible side-effect?  

How will I ever get out of this debt? 

Will I ever have the career I want? 

What if I never find a partner willing to go through this with me?  

Will I ever stop being afraid to use other people’s bathrooms

What if I am always in pain? 

That is really only scratching the surface for me. Truth is the future IS uncertain because I have chronic illness but the future is uncertain for everyone. The best I can do for myself is do what I can to educate myself and try to manage my disease with the help of a good medical team. Even then – if I am armed with knowledge, the best medical team, stellar insurance, and follow my treatment plan exactly; there may still be problems and complications. So then how do you plan out your life without letting fear get in the way?

How Do You Make Plans Knowing Things Can and Do Go Wrong because Of Your Health?

Me and a friend in our cap and gown for high school graduation

Like healthy people, those of us with chronic illness make long-term goals like finishing college and pursuing a certain career. We dream of the things we want for our lives like a house, kids, a loving spouse, a stable income, or whatever it is you want your future to be. It’s not so easy when you don’t know whether or not your disease is going to take over and keep you from those things. Even short-term goals like going to a friends party on the weekend is hard to commit to when your health is in a bad place.

Dwelling on the ‘what-ifs’ can be pretty depressing but it’s not abnormal for patients to fall into that way of thinking. I really can’t tell you exactly what to expect because I lack the capability of predicting your future. Huge surprise, I know! All I can say is that many people living with the illnesses that I have do quite well. Especially IBD. Not so much with my other illness, CIPO, but that does not mean you are doomed. I have friends who have both illnesses who have accomplished so much because they have found a treatment or surgery that works for them or they have a milder form of the disease. 

For myself I have had to make drastic changes to my life plans and it was really difficult for me to accept at first. As my health progressed it became clear that the career I went to college for wasn’t going to work out. I had to let go of that dream and focus on new ones and for awhile I had no idea what else to do. I randomly fell into the job I work now and I am able to make my own schedule which is nice and the pay works out to be more than the career I was going after anyway as long as I am able to work enough to earn that amount.  

Flexibility is Key

For me a go-with-the-flow attitude has worked best when it comes to short term plans. I have learned how to say ‘No’ when I am unable to do something and not feel guilty about it. The world has kept on turning and we all move forward. I have also learned how to “half commit” to things. I say things like, I will be there if I can be there, or something similar. Communicating with my friends and family helps a lot. Your loved ones will be much more likely and willing to understand if they know why you cancel plans or seem wishy-washy. Don’t be afraid to let them in on what your life looks like because of your health. Explaining that you would love to do something but you are unable to predict how you will be feeling is very helpful for both you and them. I have also learned that reminding those people that I still want to be invited is necessary. For awhile after missing out so many times people just stopped inviting me to things so then I had to explain that it was a particularly rough time due to hospital stays, surgery, or whatever it is, but I still want to be invited every time so that when I can attend I have the option. There are also people that will just never understand. After I’ve done all I can do to explain myself I just move on. Not easy initially but as each new day comes that situation doesn’t sting as much. Losing people because of your health may be a reality you have to face. 

You Should Still Make Plans, Set Goals, and Have Dreams but also Be Realistic

What I’m trying to say is that you should still make plans, set goals, and try to accomplish the things you want to but also be flexible and realistic about your situation. It would be terrible if we had nothing in life to look forward to. Many patients living with the chronic illnesses that I have do incredible things and are able to achieve what they set out to do. On the other hand there are those of us out there who have been dealt a more shitty (heh!) hand. I myself have had severe disease since I was a kid and have had to learn to accept certain limitations and I have come to understand that for my personal situation to expect the unexpected.

I’m not one of those advocates that makes empty promises about how you can do ANYTHING with *insert name of chronic illness.* If you’re looking for those kind of empty false promises you came to the wrong place. That is not reality. Chronic illness CAN hold you back. It CAN interfere with your goals and plans. It does not care if you believe you can do anything you want to. Chronic illness is not fair. Some people end up with chronic, severe illness and have many surgeries, hospital stays, and complications and for those people allowing yourself the freedom to change your plans and set new goals can be freeing.

There has to be realistic goal setting happening otherwise you’re setting yourself up for constant disappointment. I think that you definitely should give your goals a good shot. I also believe you should, within the power you have, give your health it’s best shot. But if you are the person living with a very severe chronic illness that hasn’t afforded you a full year without a hospitalization or surgery in a long time then maybe it’s time to think about new goals.

I think this video is hilarious because it pokes fun at people who say things like “you can do ANYTHING!” or “Don’t let anyone tell you what you can and can’t do.” Watch it. There is no way you wont laugh.

The Future is Uncertain for Everyone

It would be so easy to blame my health for the things it “took away from me” but there is no point because it won’t do a thing for me other than make me more upset. I don’t know what my life would have been if I were never sick but it doesn’t matter because I am sick so I must accept that.

The future is uncertain. It is for everyone; sick or not. It’s just a little more uncertain for us and sometimes more difficult to make things happen. Make your plans and if you have to adjust them, then do that! Sometimes I just take it day by day and after going through all that I have been through I know that no matter what happens things will work out. This does not mean that I am always positive. It doesn’t mean that I am not human and I don’t ever feel sorry for myself or sometimes wish things were different. I just know that this disease took me down a different road than I had ever planned for my life and it’s okay. 

It’s okay.

Sara

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