Community Forum

I was diagnosed in my early 20s w/ UC. I am about to turn 30 and have not had more than a year of remission at a time since. This has severely limited my ability to work & healthcare costs in the US are outrageous. So I’m wanting to know - how does anyone survive this financially on one income and with no other financial support? 

I’m at a loss and feel very limited, as I was too sick to work consistently throughout my 20s to gain the experience needed to get higher paying positions over time. Is there any hope? Or are we just doomed for debt and financial ruin having these diseases? Why is there no support for this major issue we face?

I am currently in a flare up and looking for a new job because I need better health insurance, but what company is going to hire a sickly person with a history of not being able to work full-time because they are sickly? And how am I going to get time off immediately after starting a new job to see my GI and get treatments? I feel like I’m in a vicious circle with this situation. I’m a very resourceful person, so I’ve searched high and low for any kind of assistance and there just isn’t any. 

Reply posted for SigrunDale.

Hello,

Thank you for your question and I’m sorry to hear about your diagnosis and the challenges it has presented. Unfortunately, I’m not an expert in this area and couldn’t able to provide specific advice. However, there are a number of online resources and support groups available that may be of help. Additionally, many local libraries and community centers offer free or low-cost classes and workshops on a variety of financial topics. I hope that you are able to find the help.

                                                                                                                                          Andersen

Reply posted for Ucerinhouston.

I believe it is not legal for an employer to ask about medical conditions, although I am not a lawyer and live in CA where state laws are less onerous for employees.  Some quick research should get you an answer.

Maybe you can find a job that allows you to work from home.  Again, I am not an expert but do know such jobs are out there, like customer support or software coding.  Talk to friends and family also to see if they have any ideas.

Lastly, I worked for nearly 50 years with Crohns and managed to get by just fine.  Yes, I had a professional, office job where leaving my desk was not an issue.  nevertheless, you should not worry about getting up to go to the bathroom.

Reply posted for Ucerinhouston.

If I were you, I would look for a job where you can access a bathroom at all times without it interfering too much with your work. As long as you still get the work done, everything should be okay. As for doctor appointments, try to go on your break time.I know it is hard to find an understanding job and I have anxiety about my future career because of this.I wish you the best. 

Reply posted for Ucerinhouston.

Hi there.  First of all, don't give up hope.  There is a lot of help available out there.  You have to be willing to look for it.  I was unemployed for a long time and on Humira.  I went to Abbe Vie and qualified for their Patient Assistance Program.  They sent me my medication FREE every 90 days.  Talk about a life saver.  Even when I had insurance, their co-pay program is pretty great as well.  I only paid $5 for my medication and that stuff is expensive.  A lot of drug companies have assistance programs like these, go to their websites and check them out.  Call their 1-800 numbers and talk to them.  That is how I found out about the free medicine program.  As for your job hunt.  Don't tell your future employers about your illness until you are hired.  They do not need to know that about you.  Your disease does not define you and your ability to perform a job.  Once hired and you have found a GI and made an appointment, speak with your boss and explain that you need to take time for this.  You may then go into as much (or little) detail as you feel you need.  Your personal health info is yours, your employer does not have to know.  Nor can they discriminate against you for this.  Offer to use your lunch and work late to cover your time away.  This is what I do for my appointments.  It works well.  I also found a doctor that isn't too far away to cut down on travel time so it saves as much time away as possible.  I hope you can get it worked out.  It was hard for me, too.  I finally found a good job with an understanding boss, but it isn't east.