- Spontaneity goes out of the window.
- There are 84 days out of the year in which I am guaranteed severe pain.
- Being unable to work full time hours due to chronic fatigue. Having to work part time has a negative impact on my finances. I have had to leave jobs because of my illness, either because I’ve had a lot of time off or that I am physically unable to do the job.
- I have learnt to accept change.
- It takes a lot to accept the restrictions caused by my chronic illness.
- I have received several labels since my Endometriosis became a serious problem- lazy, drug-seeker, attention-seeker, depressive, unreliable. Having to deal with peoples’ prejudices.
- I know my body.
- I can’t eat certain foods – it’s great trying to figure out which ones are OK.
- I get anxiety waiting for my period to start.
- I am dependent on my husband a lot of the time.
- I act like a drunk fool when I have to take strong pain relief.
- Being pushed into contraceptive / hormonal / surgical treatments or deal with the pain.
- Being pressured to have a baby sooner due to the threat of infertility.
- Losing friends: There are limits to a person’s willingness to understand.
- Acknowledging the link between depression & chronic pain.
- Strain on relationships: spouse, family, friends.
- Guilt & disappointment.
- I’ve gotten really good at hiding how I feel, pushing it to the back & concealing my pain.
- I know my Drs, nurses, A&E staff really well- continuity of care 100%
- There are times when I hate my body.